Category Archives: Parenting

Walking for a Cure and Trying to Employ My 14-Month-Old

May 23, 2013 Rebecca Gaunt 4 Comments

I’m still here, even in the midst of all the awesome guest bloggers I’ve had so far this month for TSC Awareness (still accepting guest posts). You might remember me from such posts as Bite Me, United Healthcare or Bite Me, Medical Billing Department That Won’t Call Me Back.

The last week has been really busy. I’ve been doing some freelance writing, which has been immensely rewarding in all ways but financial. But if I keep it up, I’ll have that Italian villa by the time I’m 127. I write for the parenting and education divisions of an online media company. No seriously, I write about parenting in, not one, but two locations. Makes you rethink your Google searches, huh?

The Georgia Step Forward For a Cure took place on Saturday May 18 at Marietta Square. So far it has raised $70,000 and counting–thank you Dee and Reiko for organizing this year after year. I was also named as the new chair for the Atlanta/North Georgia TS Alliance, which I’m pretty excited about. Sarah, a reader who has been following along with the guest bloggers, asked me if I would be there. I told her to look for the obnoxious yellow shirts. She found me.

Connor is doing well; he’s still progressing, although it can never be fast enough when your kid is delayed. We just hit 14 months, and we’re hoping he’ll crawl soon. He can hold the position if we put him in it, it’s the moving part that is the problem. He can move backwards when he’s on his stomach. The problem is, he doesn’t ever want to be on his stomach. He will expend more energy trying to flip himself over when I have him wedged in on both sides, than he will to move a couple feet. He can also stand with minor support, but again, we have to put him in the position. He doesn’t pull himself up yet. I’m also desperately hoping to hear some consonants soon. He has mastered uh, and quite frankly, at this point he can add a ffff and a kkk and I’ll be the one parent that’s thrilled.

We recently increased his meds when it seemed some sort of seizure activity was breaking through again. It helped, but I still occasionally see his eyes go up and linger a few seconds, or he’ll stare off to the side with tightly pursed lips. They don’t seem to have a lingering effect like previous seizures though.

His delays do seem to have created the very player of son I swore I wouldn’t ever raise. I’ve never formally announced his health issues in music class, although I also don’t hide it. Some people have become aware as the music teacher is also his music therapist, and they have overheard us talking. I also wear my TSC shirts to class. But some may actually believe that I am such an incredible disciplinarian, that I have actually trained him to never leave my side (easy to believe when you’ve never seen him try to empty his entire bottle into his belly button). So there he sits, very cool, very “you come to me, I don’t come to you.” And the girls, oh yes, they crawl right over. They can’t help themselves. He’s so James Dean, if James Dean traded his cigarettes for music sticks.

I’ve also been looking into just how young kids can start gymnastics because it would be a shame for Connor to ever lose the ability to do this:

We might be looking at a career gymnast. Of course, he has also shown an interest in dentistry.

And Salvador Dali impersonation.

Dear United Healthcare, Stop Being Creeps (mixedupmommy.com)

Current Events, Guest Bloggers For TSC Awareness Month, Parenting, Tuberous Sclerosis

It Affects Us All

May 19, 2013 Rebecca Gaunt 1 Comment

Day 18 of Guest Blogging for TSC Awareness Month

By guest blogger Tina Carver (Eureka, California)

Please check out Tina’s blog at http://captainjacktastic.wordpress.com

Prior to April 2009, all that I knew about Tuberous Sclerosis Complex would fit on the head of an angel dancing on the head of a pin.
In other words:
NOTHING.
Never heard of it. AT ALL.

Once I met Jack, all of that changed.
I became Jack’s stepmom in September of 2010, and shortly thereafter, his birth mother left the area, leaving us with sole custody.

Now, I have to be honest. The hardest part of Jack’s TSC had already happened. The in vitro diagnosis. The debilitating and never ending febrile seizures. The rounds and rounds of various seizure meds. The brain surgery.

That all happened BEFORE.

In the TSC community I feel a bit adrift — I get asked questions about the specifics of his disease — the types of tumors, etc– and I cannot answer them.

My life with TSC is all about moving forward and making Jack’s life the best it can be in the here and now. It is also about dealing with how the disease affects US: myself, my husband, my daughter.

Our life revolves around “what if’s”. Every plan that we have has a back up- “just in case”. We have emergency seizure meds in each of our cars, Jack’s backpack, the home. We plan and plot ANY trip to make sure we are near hospitals. My husband and I get THREE WHOLE hours a week to be adults outside the house. My daughter knows that any school function most likely means only ONE OF US will be there (respite is a harsh mistress). Tuberous Sclerosis may have had its way with Jack, but it also has the rest of us in its grip EVERY. SINGLE. DAY.

But there are days……lovely days like last Sunday when all of us were in the backyard. My daughter running fully clothed through the sprinklers, much to the delight of Jack who had his favorite spot on what he calls the bouncepoline. The sky was clear and sunny. There was laughter from all. And it’s for these moments that we continue on. THAT is what makes it worth it all. We forge ahead because these moments make life worthwhile. These moments balance those tense moments in the ER, the sedation for MRIs, and the uncertainty of the future.

Now, to be honest, how Tuberous Sclerosis has had its way with Jack has NOT been kind-

Febrile seizures have left permanent damage.
There is a thick scar that crosses his scalp from brain surgery.
There are developmental delays. There are physical issues.
There are over 30 tumors in his brain.

But over the past few years we have seen progress.
We have speech and communication.
We have staid the growth of the tumors.
We have found the right cocktail of meds to keep away the seizures.
And Jackson the boy is blossoming……

SO what else can I say about this disease that I have come to know and loathe?
That it took away one boy and left us another.
One that I love just the same.

Jackson hanging out in Darrah's room. — Jackson hanging out in Darrah’s room.

JACKSON The Poem

In my dreams

I constantly see

You

Your smile so bright

and beautiful

A mischievous grin

to match the

glint in those

bright blue

Eyes

You run

Untroubled

Carefree

with an easy

and natural

gait.

Laughter unfettered

Musical

And there are

no tumors

no damage

Or delays.

There is only a boy

who is

Not You.

Trends in the Prevalence of Tuberous Sclerosis Complex Manifestations: An Epidemiological Study of 166 Japanese Patients (plosone.org)
Family’s anguish over rare disorder (yorkpress.co.uk)

Current Events, Guest Bloggers For TSC Awareness Month, Parenting, Tuberous Sclerosis

Why We’re Thankful for TSC

May 17, 2013 Rebecca Gaunt 1 Comment

Day 17 of Guest Blogging for TSC Awareness Month

By Guest blogger Catrina Jones (Monroe, Louisiana)

Note from Mixed Up Mommy: This was originally a Facebook post in the TS Alliance forum. I asked if I could share it here because I think it’s such a great story.

My daughter Hannah Grace, now 11 years old, started having infantile spasms at 8 months old. After an EEG was performed, it was determined that she had idiopathic benign occipital epilepsy. We were then referred to a local neurologist a month or so later, who ordered MRI/Brain prior to our appointment. I will never forget the day I received the call with the MRI results from the neurologist’s office where the nurse told me over the phone (while I was at work) that it was suspected our daughter had tuberous sclerosis. She said I needed to pick up the film and report to bring with us to Hannah’s appointment, and the doctor would discuss this further. When I asked her what tuberous sclerosis was, she could not tell me and informed me that the doctor would have to give me that information. I was in such shock and dismay that I dropped the phone at work crying, and a co-worker had to finish the call with the nurse. This co-worker immediately went to the internet and pulled up a fact sheet about TS and began reading it to me. After I composed myself, I called my husband and the rest of our family with this news of our daughter having something we had never EVER heard of. I remember having this huge fear of the unknown. When we took Hannah Grace (who was 11 months old at this time) in to the appointment, the neurologist said that he wasn’t sure 100% she had TSC because of lack of other symptoms, but when he started naming off things associated with TSC, the white patches were present on Hannah Grace. He took the woods lamp and inspected Hannah Grace, and to our surprise, she had a LOT of them on her body. He then said he had to concur that she did have tuberous sclerosis. As for her infantile spasms, he ordered her phenobarbital. Later on, her IS started developing into partial seizures so Tegretol & Topamax was added to control those.

So, with the new diagnosis of TSC, began a life of yearly testing and doctors visits. Since Hannah Grace was so young when she was diagnosed, we were unsure of the severity of her TSC. Did she have a mild case or was hers more severe? She was meeting milestones at her regular pediatric checkups, so we were hoping that by controlling the IS, just maybe she would live normal life. She does have some mild developemental/learning/cognitive delays, but at 11 years old, she is pretty much living a normal life that TSC says she should not be living. She has been seizure free for eight years now, and we could not be happier with her progress and accomplishments . She has overcome so much in her life. But our story doesn’t stop there.

Where most of you hate/despise TSC, our family is THANKFUL for it. You see, it was because of Hannah Grace having TSC that we went to her yearly checkup with the neurologist this past July. Actually, it was a six-month checkup, because we had been weaning her off of Topamax, since she has been seizure free for so long. The neurologist always runs labs to check her medicine levels. Those labs that day came back to show Hannah Grace had extremely low white blood counts, and it was thought she was developing a virus. We were told to take her to her pediatrician for a followup to let them check her for mono or other viruses. We went into the office the next day, and they re-ran her labs to find that her counts had dropped even more. They tested for numerous viruses and all came back negative. We were sent home in hopes that she had some type of virus that she would rid itself over the next week, and were told to come back later for repeat labs. The following week, her counts were even lower than the week before. The pediatrician was baffled because Hannah Grace showed no signs of being sick, yet her counts continued to decline. We were sent home under strict isolation and told if she developed a fever to get her to the ER. That night brought the fever and an ER visit. She was admitted to the hospital where our new journey was just beginning.

For two weeks in the hospital, Hannah Grace fought extremely high fevers, developed a rash, and her chemistry levels began to fall. She eventually ended up in PICU, where the

MD told me she was critical and needed to go under a pediatric hematologist because her counts had bottomed out. It was determined that we would be transferred to a Baton Rouge Children’s Hospital under the care of a hematologist. When we got there, they believed she had an infectious disease, so tests were run for every infectious disease/fungus there was, and everything came back negative. After a week of this, a bone marrow aspirate was done August 7, 2012, and we were told on August 8, 2012 that Hannah Grace had acute lymphoblastic leukemia. OMG, for a second time in our lives, we were hit with devastating news. Our little girl has cancer. The last ten months of our lives have been spent at St. Jude Children’s Research Hospital & Affiliate fighting leukemia. I would give anything in the world if I could go back in time to the days of her having to deal with just TSC. TSC we were managing and doing well. Hannah Grace is in remission, but she will have to be in treatment for the next 2 1/2 yrs to make sure she is completely cured of leukemia. This road has had many difficulties, but we are most THANKFUL that St. Jude has decided to help treat her TSC along with the leukemia. This week, we came back St. Jude because they started Hannah Grace on Rapamune (Sirolimus) to try to shrink the SEGA and other tumors she has throughout her body (mostly on her brain & kidneys). We are so THANKFUL to have this opportunity, where we probably wouldn’t have had it back home in our small town. God works in mysterious ways!

We invite you all to checkout our pages at:

https://www.facebook.com/LouisianaTuberousSclerosisPage

and https://www.facebook.com/HannahsHopeForHealing.

Mutation timing counts for tuberous sclerosis (futurity.org)

Current Events, Guest Bloggers For TSC Awareness Month, Parenting, Tuberous Sclerosis

Humor Gets Us Through the TSC Battlefield

May 16, 2013 Rebecca Gaunt Leave a comment

Day 16 of Guest Blogging for TSC Awareness

By guest blogger Renee Seiling (Westbury, New York)

My husband and I married in 2007 after dating for over six years. We always planned to try and start a family in September 2008, and we did get pregnant that month. But we never planned for our daughter to be born with an incurable disease.

May 15, 2009 we heard devastating news; they found rhabdomyomas on our unborn daughter when we were 35 weeks pregnant. That is when we first heard the words tuberous sclerosis. I remember crying at home that night and my husband said to me “She can feel everything from you. You are stronger than this and she is going to get her strength from you, so no tears, so she’s as tough as you are.” He was right, so I started doing research, met with genetics doctors, cardiologists and had sonograms every 3 days to check on her. They induced our pregnancy three weeks early and admitted her to the NICU.

It was so hard to not have your baby in the room with you and having to go down to the NICU for feedings and for the doctor’s rounds. But the hardest was watching the days when babies were not well and they would be crashing right before your eyes. I did not know any of the moms there, but we all felt for each other. Seeing babies that have lived there for four months made you realize that you did not have it so bad.

When she was 4 days old a brain MRI confirmed TSC. Zoey was born with countless tubers on her brain and a subependymal giant astrocytoma (SEGA) as well. We were told by her neurosurgeon that it is the second largest SEGA he has ever seen, lucky us. Fortunately we were also told that if it ever grew it is operable. Zoey had blood work to find the strand of TSC she might have and at 8 weeks old it was confirmed she has TSC-2.

We had Zoey start early intervention when she was 4 months old, one of the greatest decisions we ever made. She was granted physical therapy, and we met Sonny. Sonny was Zoey’s first best friend. He came to our home 3 times a week, and Zoey just loved him. He helped us through all of the hard times. He was there for her no matter what. When we moved from Queens, NY to Long Island, he even followed us. He made sure he found a company that also worked with Long Island early intervention so he could stay with her. He was with us for 3 years, and I cried on his last day. He will always be remembered.

Zoey also had speech therapy and occupational therapy at home three times a week. We met Hadiah, a no nonsense OT who always made Zoey work harder and still have fun, and Kelly, her speech therapist ,with whom Zoey fell in love with immediately. Her bubbly personality helped Zoey sit through her 45 minute sessions.

Zoey is developmentally delayed; she has been going to school since she was 2. Zoey has a team of therapists and teachers that have helped tremendously. Zoey can wave hello and goodbye, blow me a kiss, give high fives, climb stairs, run, jump and loves spinning to get herself dizzy. These are simple gestures that I thought she was never going to be able to accomplish. While she is non-verbal, we always have hope that one day she might find her voice.

Zoey has been through more in her four years of existence than most go through in a lifetime. When she was 6 ½ months old she started having infantile spasms, I remember calling the on-call pediatrician because it was a Sunday, and she told me, oh she’s probably just teething. Zoey would cry, and when she stopped, her arms would go above her head and her eyes would roll to the back of her head while her legs crunched up. I knew it was not teething, so I called her everytime she had a spasm and had an EEG appointment made in two days.

Zoey spent her first Christmas Eve in the hospital and started a steroid, ACTH. I had to give her an injection every morning in her thigh. I remember the first time I had to do it at home. My dad came over to help me and hold her leg because I was so scared she was going to move. Lets face it, this steroid was a nightmare. All she wanted to do was eat, sleep and poop. But thankfully, because of the TS alliance, I was able to make contact with a fellow TSC mom, Cindy. She helped me get an appointment with a new neurologist, Dr. Orrin Devinsky, at NYU. He wanted her to start Sabril immediately. I am not even sure if Cindy remembers helping us, or if I ever thanked her enough because with Sabril, Zoey’s spasms stopped after the first dose and she still has to take this medication twice a day.

Zoey’s development had worsened after the spasms. She had a difficult time trying to crawl because she had gained five pounds in three weeks from the steroid, but Sonny, our superhero helped her. She was crawling at 9 months and started walking at 15 months old.

Then when she was 17 months old, Zoey vomited and turned blue. She was rushed to the hospital, where countless medications were given to her, and even a defibrillator was used on her. I thought we were going to lose our little girl. Once they put a central line in her thigh, the medication finally stabilized her after two hours, the longest two hours of our lives. They diagnosed her with Wolf Parkinson’s White, an extra electric charge in your heart causing dysrhthmia. Zoey spent eight days in the hospital trying to find the right dose and right kind of medication to help keep her heart beat at a normal rate. She takes flecainide and amiodarone still, just to maintain her rhythm. We spent Thanksgiving in Columbian Presbyterian Hospital that year, and you know you’re supported when your sisters and brother-in-law show up with Thanksgiving dinner, crockpots and all. We ate a very thankful meal that year for having our Zoey with us.

Well wouldn’t you know it, two days after she was released, Zoey was unresponsive again; we assume it’s her heart and call 911. She gets to the hospital, and it’s now seizures… hospitalized again, and prescribed Keppra. Well that month of December 2010 proved to be a crazy one. I stayed with my parents because they live so close to the hospital. That was a good decision because she had a seizure every 2 weeks that she could not get out of; she was hospitalized a total of eight days in December, including New Year’s Eve.

Some years are good, and some are bad. Last year, 2012, Zoey had some rough seizures. Zoey never gets out of her seizures. She always needs diastat, an emergency seizure medication, to stop the seizure. But then she has shallow breathing so she needs to be intubated…that happened six times last year. Most of Zoey’s seizures have been febrile as her immune system is slightly weakened, since she is on a newly FDA approved drug called Afinitior, a chemotherapeutic drug. Afinitor is prescribed to try and shrink a TSC person’s SEGA. Zoey’s SEGA has shrunk and is now stable. Her doctor said that she still might need brain surgery one day because of how large her SEGA is, but for now, thanks to the medication, she does not need to have any surgeries. We also had her start a vitamin, probiotic, and that seems to help her fight off any illnesses she might receive.

While my husband and I never planned to have a special needs child, we do. Now we just try to keep our sense of humor about everything, and realize she is the strongest person we both know. I mean when you get a needle stuck in your arm to take blood for the umpteenth time, and you just look at it, and then just start playing with your iPad like the needle is not there, that’s pretty amazing for any child.

Zoey is also one of the happiest kids you would ever meet. She is always smiling, laughing and hugging everyone. Everything she goes through has not changed her demeanor. She refuses to let TSC run her life and chooses to just be happy. Her outlook on life has helped us keep our sense of humor and live everyday to the fullest.

I like to find the humor in the fact that you never thought you would be writing her teachers asking if she had any bowel movements because of how constipated she gets from her medications. Or your mom texting you that her poop was “hard like little nuggets, I gave her some prunes.” But it’s humorous and gets me through the hard days.

We try to find the humor in everything we do, even the hospital visits, especially when you are dealing with doctors who sometimes forget how to talk to parents. Zoey had been intubated and was being moved to PICU when her tube came out and she started crashing in the hall. They had to rush her back to the ER to fix it. Everything was fine in a few minutes, but the ER doctor turns to me and goes, “Well that was scary, huh?” Really doc, is that appropriate to say to the worried mom? And then he high fives your husband and says ,“Until next time.” Your husband just replies back “Well, I hope not.”

Nurses have also told us that we are the calmest parents they have ever met. We have learned in Zoey’s 26 hospitals stays to just kind of stay out of the way, let them do their job and when she is stable you can hold her hand and lay with her. We remember a nurse saying, “You guys are amazing. I mean you are sitting here watching and just waiting patiently, when we have moms here who have a kid that stubbed a toe and they are freaking out.” See, humor gets me through these times.

Our family refuses to receive a “pity party”. Instead of people feeling sorry for us, we decided to try and raise awareness for an unknown disease. We have attended the TSC walk in Wantagh Park, NY every year it has existed; this will be the fourth year. Our team is Zoey’s Entourage. All of our family and friends come and support TSC and our team has raised over $15,000.00 for the TS alliance. This year the walk is on September 21, 2013. You can find our team page below, with pictures of Zoey and her story:

http://my.e2rm.com/personalPage.aspx?SID=3720000&LangPref=en-CA

We’ve also met an amazing family, the Spears, whose daughter, Ally, also has TSC and they are the chair people for the Wantagh walk. Their family has a fundraiser every year for TSC before the walk to raise donations. We finally got to attend last year and donate some baskets for the raffles. It was a great time. I met fellow TSC families, watched people empty their pockets for an unknown disease, and win a couple of baskets as well! If you are in the NY area and want to get out and have a good time, and raise donations to help find a cure, join us or if you know a company or yourself would like to donate items to for the raffles, contact me and I can give you some information:

August 12, 2013 from 6PM-11PM.

The Nutty Irishman

323 Main Street

Farmingdale, NY 11735

Just $10.00 entry fee, for a fun time, with live music, raffles, Chinese auctions, food and a cash bar.

This year our local High School’s Key Club had a fashion show honoring Zoey. They were raising donations for our family’s medical expenses and helped raise awareness for TSC. The halls were covered in blue TSC ribbons and the crowd there was their largest yet. Even the elementary school wanted to get involved and had a “Zippers for Zoey” day. They all wore zippers and if they did not have one, the teachers put zippers on pins and the kids wore them all day. The Key Club made a video raising awareness for TSC and sharing Zoey’s story. I might be a little biased, but it’s the best video ever made, it should win an academy award. The link is below if you would like to learn a little more about TSC:

http://www.youtube.com/watch?v=PEK9N4NgwEY

Our family will always raise awareness and give everything but up in trying to find a cure. Zoey has had seven MRI’s (so far), been intubated six times, has had 14 EEG’s, and too many blood tests to count, but she gets up from all of her procedures with a smile on her face. So we just take it one day at a time. Some days are harder than others, but Zoey does not let that bring her down. She gives the greatest hugs in the world and is our warrior. I can listen to her laugh all day long. So no pity party please; we are way too busy laughing, hugging and smiling the day away.

Renee

Email: Rseiling3@gmail.com

Current Events, Guest Bloggers For TSC Awareness Month, Parenting, Tuberous Sclerosis

An Eleven-Year-Old Takes on Capitol Hill

May 15, 2013 Rebecca Gaunt Leave a comment

Day 15 of Guest Blogging for TSC Awareness Month

By guest blogger Jennifer Silva (Prince George, Virginia)

Most people never forget the day something tragic happens to their child. Little did we know September 19, 2002 would put us on a never ending journey. What started out as a normal morning that day, ended in exhausting weeks and months of the unknown. My first child Jared was born five weeks premature, after complications of preeclampsia. Even though he made his debut into the world much earlier than anticipated, he was the image of health. He weighed 5 lbs and 15 ounces, with healthy lungs and heart. He incurred a small bout with jaundice, but other than that everything was seemingly great.

On September 19, 2002, Jared was approaching 9 months old. He played that morning, with no warning signs of what was about to happen. Shortly after he laid down for his nap, I heard a very odd sound coming from his room. After a few moments, I went to see what the sound was. I was in total shock at the sight in front of me. Jared was in a full seizure, jerking about in his crib, and foaming from his mouth. His dad was home at the time and called 911. It seemed like an eternity, before the ambulance arrived. That seizure lasted more than ten minutes. Once at the hospital, doctors weren’t sure what had caused his seizure. His cat scan revealed what was thought to be blood. He was transferred to a larger hospital, into a PICU unit.

An MRI was done and we were told he had bleeding on his brain. After several days in the PICU, hospital social workers started questioning us as to what had happened to Jared. Jared moved down to a step down unit, and things started to get weird. We were being treated very oddly. Jared had been at the hospital for a week, when the local sherriffs’ department showed up and said that someone at the hospital had reported a possible shaken baby case on us. We were in total shock. Within days we were in court being asked by a judge if this had occurred. Of course it hadn’t. They put the poor child through a whole body x-ray to see if any broken bones had healed over from past injuries. The case was considered unfounded, and we left the hospital with Jared after close to two weeks has passed. The watchful eye of social services followed.

Months went by and Jared did well on his anti-seizure meds. An MRI follow up was done, and to our surprise, the blood was still there after months. That’s when they knew there had been a terrible mistake. Jared had a tuber, not blood. A little more time went on, and at Jared’s next visit, it was discovered that Jared had odd white spots on his back under a wood’s light. That’s when the words tuberous sclerosis came up. Of course, back then there really wasn’t that much info out on the web, and most of it was very traumatic information.

Jared went on about his childhood under the watch of his neurologist. He did very well, with few seizures and few tubers. As he got older things did change some. The skin abnormalities have come out (angiofibromas, café au lait, depigmentation, some forehead plaques), and some learning problems have been noticed. Jared did so well on the seizure side of things; he went for years without an MRI. Everything changed on December 26, 2011. Jared started having seizures and was rushed by ambulance to the hospital because he wasn’t breathing. It was determined that he had strep throat and had outgrown his seizure med levels. An MRI was done, and they found a SEGA. The SEGA didn’t cause the seizure, but it most likely wouldn’t have been known about, if not for the seizure, until it caused problems.

Initially he was just watched, but then we saw a pediatric oncologist who ordered a new MRI. It had been eight months since the seizure sets, and Jared had three SEGA’s by then. He started afinitor, and as of March 2013, his SEGAs have drastically shrunk. In June he will have a new MRI and go from there. Jared accompanied me to the March on The Hill in 2013. He saw how government works, and was amazed at all of it. We have had several publications about our story recently and I am glad to see TSC getting attention. When I took on Chair of the TS Alliance of Virginia, I knew then that I would have an uphill battle. But with a little effort change can happen. Jared is a typical 11-year-old child now; he has some issues, but we are grateful for all the new advancements in TS world. His father and I divorced years ago and have given Jared a large extended family. Jared is a special child, with lots of family supporting him.

I know one day he will help out others. He helped me stuff and mail out envelopes for our Virginia Educational Meeting in June. He said, “Wouldn’t it be great if all these people showed up to support TS?” The world needs more caring, compassionate 11-year-olds like Jared.

Current Events, Guest Bloggers For TSC Awareness Month, Parenting, Tuberous Sclerosis

Fighting for My Child

May 14, 2013 Rebecca Gaunt 5 Comments

Day 14 of Guest Blogging for TSC Awareness Month

By guest blogger Jessica Sharon (Virginia Beach, Virginia)

I will never forget that day in November three years ago when my son Joey was diagnosed with tuberous sclerosis at the age of 7. At times it seems like it was only yesterday, and at other times it seems like it was forever go.

I went to wake him up for school like any ordinary day only to find he wasn’t responding to my voice, which was often typical being that he was NOT a morning person; only to roll him over and discover his eyes were rolled back in his head and he began convulsing. My initial thought at first was that he was playing a joke on me as children often do and being silly, but I very quickly realized that was not the case. It was the longest 30 seconds of my life and it seemed to go on forever. When he tried to get out of bed and walk, he immediately fell to the floor and had no feeling in his arms or legs. He began to cry in fear that he couldn’t walk and had to crawl to get around. I called 911 because I had no idea what to do or what was wrong with him. After all, he was a normal healthy child and had never had any health concerns before.

After admission to CHKD (Children’s Hospital of the Kings Daughters) in Norfolk, Virginia and numerous neurological tests, it was determined that he had TSC with lesions on his brain and heart. Thankfully, over time, the spots on his heart just went away, but spots had formed on his kidneys. I had never heard of this disorder before and had so many questions and concerns.

Fast forward three years to May of 2013. He is still averaging 3-4 absence seizures a week while on five epilepsy medications. We have tried just about every epilepsy medication out there to no avail. I always thought the seizures would be the worst of it all, but honestly, it’s the learning disabilities, mood changes, and just the overall change in his personality that has affected him and our family the most. He doesn’t want to be involved in any sports or activities that put him in a position to be surrounded by people with the possibility of a seizure occurring. It was such a struggle and an upward battle to get him an IEP within his school. As parents you truly must fight for them and be their biggest advocate because no one else will. He needed one desperately because his confidence was very low. He never felt smart, and he just struggled every day within the classroom; he is so bright and intelligent, but all the medications just seem to suppress much of that. He will be undergoing resection surgery in June at VCU medical center in Richmond to remove the cyst they confidently believe is causing the seizure activity. There is no guarantee that this will be the end of seizures for him, but as his mother, all I can do is give him the best chance at normalcy and a life free of seizures. After all, isn’t that what all of us want for our children, for them to be happy and healthy?

Rice has help for people with epilepsy (news.rice.edu)
Implant ‘predicts’ epilepsy seizures (bbc.co.uk)

Parenting, Tuberous Sclerosis

Dear United Healthcare, Stop Being Creeps

May 13, 2013 Rebecca Gaunt 1 Comment

I haven’t checked, but I’m guessing mental healthcare is not well covered by my insurance policy. I assume this as United Healthcare is currently trying to push me over the edge, and clearly they don’t plan to foot the bill.

United Healthcare has denied our appeal of their denial of Connor’s helmet. Apparently, while some devices are covered, this helmet is an orthotic device intended to “change the shape of the body” and is specifically excluded. Soooo, it’s just a silly fashion statement I guess. Chris and I are just so ashamed of the flatness of the back of Connor’s head that…oh, no, wait a minute. His head shape didn’t particularly bother us. His neurologist recommended it, wrote the prescription, and his physical therapist and pediatrician concurred that it was good idea. Well, I’m no doctor, but I’m guessing they would have told me to buy him a hat at Target if they were just trying to create the new Gerber baby.

So here we go. Appeal number two, complete with letters of medical necessity. Bite me, United Healthcare. Thank you for continuing to waste my time. I also spoke highly of you throughout 2012 when Connor’s medical bills hit somewhere close to $400,000. Sure, we hit the out-of-pocket max and that sucked. But somehow, when looking at six-figures, a standard in our twisted healthcare system, $7,000 suddenly feels like pocket change. Even when I’m no longer working.

But now you’ve left me focused on this $3,000 “fashion statement” and our substantial premiums we pay every month.

I found this as part of your Mission Statement on your website. Check it out:

Compassion

Walk in the shoes of people we serve and those with whom we work.

We believe:
In order to achieve the full potential of our enterprise in its purpose, to Help People Live Healthier Lives, we must fully understand and align with their needs and realities.

We value compassion:
We will walk in the shoes of people we serve and those with whom we work. We celebrate our role in serving people and society in an area so vitally human as their health. We must be truly compassionate and genuinely understand, feel and identify with their needs.

We behave:
We will actively listen to fully understand and genuinely empathize with people’s realities. We will then respond in service and advocacy for each individual, each group or community, and for society as a whole.

And may I add one more part? We will not add stress to the lives of people who have family members with chronic illnesses and health conditions.

You can help with this further by paying our doctors and hospitals in a timely manner. I don’t why it took almost a year to pay our neurologist for some of his services. I don’t know why when Connor first came home from the NICU, I received repeated phone calls from the hospital to call you and find out why you weren’t paying up. I didn’t need that.

Thanks and have a compassionate day.

Current Events, Guest Bloggers For TSC Awareness Month, Parenting, Tuberous Sclerosis

It Could Be Something, But It Could Also Be Nothing…

May 13, 2013 Rebecca Gaunt Leave a comment

Day 13 of Guest Blogging for TSC Awareness Month

By guest blogger Alison Walsh (Buckinghamshire, England)

I was about 16 weeks pregnant and had just been to see my cardiologist about my heart murmur, when he mentioned having the baby’s heart scanned just in case he had a valve defect like mine. I replied that it would be really cool to see a baby’s heart scan as I had never seen one before, and I was never offered a scan with any of my other children. As I wanted to see a baby’s echocardiogram, I mentioned the heart scan to my baby consultant and she said that it sounded like a good idea for just in case, so she sent off for an appointment for me.

I received a phone call from Oxford University Hospital a week later to confirm an appointment. I got a bit nervous for a few days because I thought the heart scan would be at my local hospital. My partner gave me a lot of reassurance that my other children were fine so this baby should be too. At 18 weeks pregnant we were driving to Oxford at 7 am. I was nervous but excited all the way there.

The prenatal heart doctor took her time to scan me, being quite quiet throughout the scan. She just explained and showed us the heart chambers on the screen. After the scan she told us that she may have seen something that she wanted to keep an eye on, but for us to try not to worry as it could be something, but it could also be nothing. She asked us to return in four weeks just so she could be sure.

At the next scan in Oxford, the prenatal doctor brought in a colleague to help her have a look. It was then that she told us that our unborn son had rhabdomyomas (heart tumours) and she was worried about three of the tumours as they were quite large. Also, one of the tumours was positioned next to his heart valve. The doctor also told us that my baby had a very high chance of having TSC, and the worst case scenario was that he would die before being born.

I went home and cried for a few days, when I suddenly thought that my other children could have TS, and if they did, they were all fine. So my baby would be, too. This thought reassured me until we returned back to the hospital two weeks later and the two doctors were waiting in the scan room for us. They scanned the baby’s heart, then told us that one of the tumours they were worried about was moving in and out of the valve with the blood flow. If the tumour got any fatter, it would get stuck in the valve and stop the flow of blood, resulting in the baby’s death. She made us another appointment and said, “Hopefully, if everything is okay with the baby, I will see you in two weeks.” She gave us a sad smile goodbye.

Well, my heart just broke. I started grieving for my baby as I waited for him to die inside me. I couldn’t sleep or eat for a week. All I did was cry, and when I stopped crying, and he stopped kicking, I cried even more thinking that was the last kick that I would feel him give me. It was the worst two weeks of my life.

Baby Theo was oblivious to my suffering, and he was growing well. Two weeks later, we went back to the hospital where the doctor said she was so glad to see us back, and she had been worrying about us. The tumour was growing longer instead of fatter, and they were still worried about it interfering with Theo’s blood flow as the tumour was causing a lot of pressure in his heart.

I was told that Oxford University Hospital head cardiologists and Southampton head cardiologists had been having a meeting about Baby Theo, and if he survived until I was 30 weeks pregnant, they would give me a c-section and operate straight away.

A few hospital appointments later the cardiologists had another meeting. They decided that as the pressure in his heart was high but stable, and as he was really too small to operate on, they would only do it as a last resort for him. We were told that if he survived until I was 34 weeks pregnant they would take him out then. But I had to have fetal echo appointments every week from 30 weeks pregnant. I was also told to prepare and starve myself before each appointment as I might need an emergency c-section if the pressure in his heart got any worse or if the tumour grew fatter.

The pressure in Theo’s heart grew slowly and steadily but didn’t seem to affect his growth in any way. Theo shocked the doctors again by surviving and thriving. We were told his heart would not take the pressure of birth, so he would be delivered by c-section at 37 weeks all being well. He would have to be in a special care baby unit for three weeks at least as his heart wouldn’t work properly after birth due to all the tumours, but they also explained that the tumours would regress after birth.

After Theo’s delivery he only had to stay in SCBU for three days because his heart was working normally and he was feeding well.

Theo was talked about by so many heart specialists that they all came to visit him in SCBU just to see for themselves how well he was doing. They couldn’t believe it, and one of the doctors even wrote a presentation on him, as they said his heart should not have really coped with all the tumours and their postitioning.

Theo was allowed home on the condition that if he looked strange or blue that we would phone an ambulance straight away, and that he was to go back for appointments every week.

Theo continued to thrive at home. We received confirmation that Theo did have TSC2 when he was three weeks old as they had taken blood from his cord at delivery.

I was ecstatic that Theo was still with me. He was a fighter and had survived against all the odds.

Theo did worry us for a while as he didn’t smile until he was ten weeks old and didn’t give a full on belly laugh until he was eight months old. I am very pleased to say that Theo is growing well, and though he gets a bit behind on his development, he then seems to catch up really quickly.

Theo has ash leaf spots on his legs and belly and sometimes stares off into space, which could be absence seizures. I try to catch them on camera to show the doctors, which is just hilarious as they only last 30 seconds, and by the time I get my camera, he has snapped out of it. He has had an MRI and we know he has multiple tumours in his brain and still some in his heart, but he is the happiest baby around. He’s always smiling. He is 10 months old now and he loves to cruise around the furniture, dribbling on everything as he goes. I think he would walk all day if I let him.

He loves his sleep and has slept through the night since he was a month old. He loves Mickey Mouse and he waves his arms and legs every time he sees Mickey on the television.

We live in hope that TS has affected Theo enough now and won’t affect him anymore.

Love you lots my gorgeous little boy! x x

Current Events, Guest Bloggers For TSC Awareness Month, Parenting, Tuberous Sclerosis

Our Roller Coaster Journey with Tuberous Sclerosis

May 12, 2013 Rebecca Gaunt Leave a comment

Day 12 of Guest Blogging for TSC Awareness Month

By guest blogger Pamela Wolthuis (Portland, Michigan)

My husband Chuck and I were married on May 23, 1997. I brought one beautiful 4-year-old daughter, Melanee, into our marriage. Little did we know on that day almost 16 years ago, that soon we would be on a journey we never expected, and that Melanee would be the only “healthy” child we would have. (Chuck loved her as his own, from the day we met on a blind date that she went on with us. He would eventually adopt her, as soon as he legally could). Less than one year later, on May 17, 1998, we welcomed our son Nicolas into the world. He was the cutest little boy I’d ever seen, and the joy of all of our lives. When he was about four months old, he had surgery for a hydrocele repair. He seemed to be fine, and then all of a sudden he was bringing his legs up to his chest, almost like he was doubling over in pain. He would cry, do this jerking with his legs, and it would go on for hours. Several times we took him to the ER, but by the time they got around to seeing him, he would stop, and they would send us home saying he was fine. We knew something was wrong, but no one seemed to believe us. I called the surgeon, but he was rude and arrogant, telling me, “He is fine. What do you want me to do, cut him open again?”

We took him to the family doctor, who agreed with me that if we thought something was wrong, there very well was a problem that we needed to get to the bottom of. His exact words I can remember to this day: “Pam, you can have a room full of the best doctors in the world, and you as a mom, know more than them about your child. If you say there is something wrong, I believe you.” He sent us on for testing at the hospital. Nicolas was set to have a ph probe, but while there, a resident looked at our baby, said he would like to do an EEG, and would that be ok? We said yes, but thought it was a waste of time. That resident was the one who cracked the case. I can still remember the neurologist coming into the hospital room and telling us our perfect, beautiful baby boy had a terrible disease called tuberous sclerosis. He told us Nicolas was having seizures. He had epilepsy. I vividly remember telling him, “Well, if you know what is wrong, fix it.” He said he couldn’t, that there is no cure for this disease, and that there really isn’t much even known about it. He left the room, and I remember just crying, telling Chuck to “tell him he’s wrong. There’s nothing wrong with our baby’s brain.” Soon another doctor came in, telling us, “All you can do is take him home and just love him for the three to four years you will have him.” Yes, he told us our baby would die by the time he was four. I was inconsolable, and Chuck was feeling like it was his entire fault because he was told he passed the TS gene on to Nicolas. They could tell, just by looking at him and the angios on his face, that he had tuberous sclerosis. The angios that he never had a name for up until that point, that he had always worried his baby would have, but that doctors had assured him were no big deal.

When the neuro came back, he told us the other doctor was wrong, and that Nicolas wasn’t going to die. It took many doctors to convince us that he wouldn’t die, but finally we believed them. The first doctor who had told us didn’t know and had told us the worst case scenario. Nicolas was started on a seizure med that didn’t help. The neuro put him on ACTH, a steroid injection given for seizures. It had terrible side effects and didn’t help our baby. At the next trip to the family doctor, he told us about Dr. Chugani in Detroit, who was a world renowned expert in TS. We were so lucky to be so close to him and were able to get in fairly quick. Nicolas was started on vigabatrin, a drug we couldn’t get here in the US, but had to go to Canada for. Insurance wouldn’t cover it, and it was expensive, so we went into serious credit card debt to obtain it. (More than a decade later, we were still paying for it, and finally had to settle it with the credit card companies, ruining our credit, so that we could afford to live. But we do what we have to in order to help save our children!) It helped, but he still had seizures and was beginning to regress. He was slipping into his own little world where he wasn’t interacting with us anymore. Dr. Chugani recommended brain surgery.

In June 2000, Nicolas had his first brain surgery. It didn’t help his seizures, so we were angry and regretted doing it. Then, all of a sudden, he was interacting again, and our happy boy was back! The surgery was successful, because even though it didn’t stop his seizures, it helped him developmentally. In 2003, we were advocating along with Dr. Chugani for more surgery. The surgical board recommended him, and he had his second resection. This time his seizures decreased. He still had some seizures and was still on meds, but he was progressing.

Fast forward another year…..We finally decided to have another baby, with the thinking that God wouldn’t give us two disabled children. On December 26, 2005, our beautiful Malarie was born six weeks early. Within an hour of her birth, she had her first seizure and was diagnosed with TS. Our hearts broke again, grieving for the “perfect” baby we prayed so hard for. That is what people who have never been on this journey can never fully understand. Although, yes, our babies are alive, we still have to go through a grieving process after a diagnosis. No, our child hasn’t died, but our hopes and dreams for what was supposed to be have died. We are forced into a place we never intended to go. But just like the beautiful essay “Welcome to Holland” teaches us, we learn that we are not in a terrible place, just a different place. So we learn to accept it, and see the beauty and good in it. It’s not a place we willingly chose, but it’s not a horrible place either.

Over the years our kids have seen more medical professionals than most adults ever do. Our list includes a neurologist, ophthalmologist, nephrologist, cardiologist, geneticist, gastroenterologist, dietician, neurosurgeon, dermatologist, physiacist, psychologist, psychiatrist, countless occupational, physical, speech, and feeding therapists, and pharmacists. We also have the whole special education team at school. The kids have had home based therapies, school based therapies, outpatient therapies, and soon, possibly inpatient therapy for our son. We have been fortunate to meet some outstanding professionals, and some have even become our friends.

Today our children are 20, 14, and 7. Melanee is a happy, intelligent college student who has more compassion than most young adults because of the experiences she has had with her “special” siblings. We know without a doubt that she will become a remarkable adult, wherever her path in life takes her. We worry, because when we are gone, she will become the guardian of her siblings, and is this really fair to her? She will be tethered to them, and they will always be a major part of her life. She has never once complained, and has reassured us that she WANTS to care for them when we are gone. We thank God every single day for blessing us with such an amazing daughter! Nicolas is now almost 15, but functions at a 3-4 year level. He is autistic, has behavior issues that can occur unexpectedly at any time, is not potty trained, and may never be. He takes eight different meds for seizures (which are still not completely controlled), behavior, and a nerve problem he just started with after his most recent brain surgery one and a half months ago. He is also the funniest, sweetest boy (when not in meltdown mode) we’ve even known. His laugh is infectious and comes all the way from his toes! Malarie is seven, but functions like an infant. She depends on us for everything. She is on six seizure meds and still has seizures several times per day. Like her brother, she cannot be weaned off any of them, because then she starts seizing constantly. She cannot walk or talk. She can, however, scoot on her butt across a room at an incredibly fast speed, and communicate with smiles and cries. Her smile can light up a room in no time at all.

This is our crazy, roller coaster journey of tuberous sclerosis. We go day to day, sometimes minute to minute. It isn’t always easy, but it isn’t always bad. Our days are filled with laughter, and sometimes tears. We have lost friends, and even family, along the way, who can’t understand or cope with the way we live. Our children will always come first, with no exceptions. We have learned the hard way who we can count on, and who our true friends are. For that, we are grateful. We know the miracle of something as small as a smile, or the quiet babbling of a child. It isn’t a life we anticipated, but it is a life we enjoy, filled with love and acceptance. In the end, isn’t that what everyone is searching for?

Advance in tuberous sclerosis brain science (medicalxpress.com)
Alysse Mengason: A Mom’s Journey With Epilepsy (everydayhealth.com)

Current Events, Guest Bloggers For TSC Awareness Month, Parenting, Tuberous Sclerosis

A Few White Spots

May 10, 2013 Rebecca Gaunt Leave a comment

Day 10 of Guest Blogging for TSC Awareness Month

By guest blogger Annaka Vimahi (Utah)

I have wanted to be a mother as long as I can remember. You can imagine the heartache my husband and I experienced when we didn’t have our first child for almost 9 ½ years. I felt so much joy when our son finally arrived, but I also felt a twinge of fear. I couldn’t explain it. I just didn’t feel that everything was all right. After Nami’s birth I was told both apgar scores were 9, and I tried to have that great news reassure me that we had a healthy boy. It didn’t. I just couldn’t shake the feeling inside me that something was wrong. I tried to convince myself that it was just because I wasn’t used to receiving good news, considering many challenges I’d had up to that point in my life. I tried to tell myself that I was being a pessimistic person and that I should enjoy my dream to be a mother finally coming true.

A couple of significant things happened in the hospital after Nami was born that didn’t seem quite so significant at the time. First, he basically came out arching his back. My mom questioned my dad (Nami’s pediatrician) about it. I could see my dad trying to keep an open mind and discussing many possibilities of why this was. One was that sometimes babies with neurological issues do that. Second, a CNA noticed a weird heart beat and notified the other staff. An EKG was ordered and the results came back as normal. We left the hospital being told we had a healthy baby boy.

I kind of succeeded in being able to relax for the first three weeks of Nami’s life, enjoying lots of cuddle time. When Nami was three weeks old, I took him to my parents’ for my sister to take some pictures of him. Near the end of the photo shoot, I noticed two white spots on the back of Nami’s leg. I am embarrassed of my reaction now, but at the time I started freaking out. I started to cry and ask, “How could my beautiful child have to have such ugly spots on his leg? Are they birthmarks? Is it vitiligo? This is so unfair!”

I remember badgering my dad with questions about the marks. He remained calm like he always does when I’m frantic about something. I told him that I had had a dream about my son having vitiligo and I just knew that’s what it was. He told me not to get ahead of myself, but that he would call the dermatologist and see what he thought. I left that night feeling angry that my son’s physical appearance wasn’t perfect. I thought, “How could this happen to us after we endured so much before he arrived?”

Over the next couple of days I noticed more white spots appearing. (I now know that Nami was born with the white spots, but as his jaundice went down and the pigment of his skin appeared, the white spots started to appear.) We finally heard from the dermatologist who suggested using a cream to see if it was eczema and we could clear it up. I was a bit suspicious that my dad wasn’t telling me everything so I pressed him about what else these spots could mean. He said that sometimes spots like this could be ashleaf spots and are a sign of a very rare neurological disorder, but that he didn’t want me to have to worry about that until we ruled out eczema. I let the issue go, but I felt that my dad was trying to protect me from something he knew was a possibility…something that was really bad.

For the next couple weeks I put the cream on Nami religiously. I checked his spots multiple times a day and even convinced myself at one point that they were getting better. Then I checked the next day and they were still there, as clear as ever. We made an appointment to see the dermatologist. I continued to feel like my dad knew more details than he was telling me. I feel now that he was hoping that he was wrong in thinking that it was TSC and he wanted to get the dermatologist’s opinion before verifying the horrible news.

While at the appointment, I could quickly see that we were not going to receive good news. The dermatologist tried to mask his sadness for us as he confirmed that the white spots were ashleaf spots and that he felt our son likely had Tuberous Sclerosis Complex (TSC). He printed off a couple of pages from one of his medical books to read over. I felt my body instantly go numb. I couldn’t believe this was really happening. That night I cried and cried and cried. I hugged Nami tight as my tears drenched his head. The dermatologist and my dad tried to keep reassuring me that there was so much variation within this disease and not to think of the worst. But, there that feeling was again. I knew something was horribly wrong. I felt my child would have it all.

It’s amazing to me how little I knew about TSC at the time considering the knowledge I’ve gained with my new obsession over the last four years. I recorded my thoughts in an email to my family the next day:

“So, what do I know? This is most likely a genetic mutation that can cause many problems. The problems range from neurological problems such as Parkinson’s and seizures to a 50% chance of mental retardation. ADHD, autism and tumors on various organs such as the brain, heart and kidneys are all possibilities. Major skin problems, eye problems and teeth problems are also possibilities. It’s difficult for us to know what Nami will have to endure until he gets some testing and experiences things as he grows. Dad is a lot more familiar with correct side-effects than I am. My mind is not too sharp right now, so I don’t want to say something wrong. I know the biggest thing we need to do is some genetic testing. It seems that dad also told us of about 5 specialists we’d need to see right away. We’ll need to get an EKG and brain wave test, an MRI and eye testing as well as some other tests that I can’t remember. He will have to get an MRI and eye test yearly. Whew…this is overwhelming!

This summer will be very different than what I expected and it’s only the beginning. I kinda feel like I deserved more of a break than I received with struggles, but I guess that’s selfish. Salesi and I have been through so much and grown through it all. During our most difficult times I felt that we were being prepared for something else. Those thoughts SCARED me but I guess I was right. It seemed quite a pessimistic view on life, but I’ve learned to be very tentative with good news. I’ve learned to try not to get so excited because it seems like disappointment is always around the corner. Throughout Nami’s birth, I took all good news in stride but had a dull gnawing sense that I didn’t know everything. My thinking throughout his short life and in the past has been that our child would be autistic. I am wishing that was it. I am wishing that what was first a disappointing discovery of what I thought were birthmarks were just that. My perspective on life has changed in an instant. Now I can see that ALL the difficulties I’ve experienced in my life have prepared me to be ready to take care of this special child. I am not shocked at this news although I can’t express the heartbreak I feel. I think I was prepared to receive this news so that I would be able to stay sane and make the choices I need to that are in Nami’s best interest.”

So far it has been a really tough road for us. Nami didn’t get the easier road with TSC (I say that knowing that “easy” and “TSC” do NOT belong in the same sentence). We have been told he has hundreds of brain tumors (no one is able to count exactly how many because there are too many), both cortical tubers and numerous SENs. He has an eye tumor, dozens of heart tumors (including one on his mitral valve which makes his blood kind of backwash), kidney tumors and cysts, and he already has 3 skin manifestations of the disease. He started having infantile spasms when he was 4 months old and has endured seizures most days of his life. He is currently having anywhere between 100-300 seizures daily despite being on 4 anti-epileptic medicines. We have made numerous trips to the ER due to seizures we cannot stop. Most of the time he is admitted. Our son has stopped breathing twice and had to be intubated and life-flighted both times. Nami is autistic. He can only say a few words and most of the time he only says them with prompting. He has major behavioral issues and at times he lashes out and can be destructive. He does not have good sleeping patterns. I feel like Nami would be much worse off were it not for my dad, though, the best pediatrician in the world (no I am not biased =).

I think back on the day I first saw Nami’s white spots. Oh how I wish now that the marks had just been birthmarks. It’s amazing how perspectives change so quickly. In a few short weeks I went from being extremely vain to wishing for all my son to have is some simple marks on his skin. Despite all of Nami’s challenges, I would not change him for anything. He is the light of our lives. He endures so much yet he smiles and laughs a lot. He loves his little brother. He sees the world in a unique way and teaches us to take time to see things his way too. He brings light to everyone who comes in contact with him. He hugs people. He makes us want to be better people. Every accomplishment he makes is a HUGE celebration. He is a FIGHTER! We are so blessed to have him as our son.

Please check out Annaka’s blog at www.afteritsoaksin.com

Advance in tuberous sclerosis brain science (medicalxpress.com)

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Living in Atlanta, loving travel and watching my son kick tuberous sclerosis complex's butt.