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Guest Bloggers For TSC Awareness Month, Tuberous Sclerosis

Scars Do Not Define Us

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Day 28 of Blogging for TSC Awareness
by guest blogger Katie Eliot  (Durham, England)

Hi!  I’m Katie, I’m 35 and I have TSC.  My TSC story should have begun when I was a baby, but a series of events put off my diagnosis until much later in life.

Doctors realised that there was something very wrong with my heart while my mum was in labour.  Mum told me that the delivery room was like and episode from M.A.S.H and soon after I was born I was whisked away for test after test.  It was assumed that I had aorta stenosis and I was scheduled for open heart surgery at three weeks old.  The surgeon opened me up, saw I actually had a rhabdomyoma (a heart tumour associated with TSC) and they realised that, without a heart transplant, it was unlikely that I would survive.

But survive I did!  However I wasn’t diagnosed with TSC as my paediatrician told my mum that “I was too intelligent to have tuberous sclerosis.  Unfortunately, back then mum had no idea how ridiculous that statement was!

So I went through childhood like most other kids.  At age 7, I moved to South Africa and rarely thought of my operation as a baby.  If I ever did, mum would say, “it could be worse, you could have tuberous sclerosis!”  South Africa was a wonderful place to grow up, but in 1992, our family moved back to the UK.  I did my GCSEs and passed with flying colours. However my life changed completely during my A Levels when, aged 18, I became very poorly at school.  I had many tests including a brain scan which showed the tell-tale tubers of tuberous sclerosis.  My world fell apart as for 18 years I had thought myself TSC free.

I think I was in denial for a while, but I finally got in touch with the Tuberous Sclerosis Association in my early twenties.  However, my tango with tuberous sclerosis was far from over!

Eight years ago, after many, many years of pain, surgeons realised I had a tumour in the joint between my right collarbone and sternum.

In August ’08, I underwent a 11 hour surgery to remove a section of my collarbone and graft a section of my fibula into my chest.  It was at this point that I realised I couldn’t ignore TSC any more and I went on my first TSA Outlook Weekend.  It was amazing and I instantly made life long friends.  Little did I realise at that time that one of those friends, Andy, would become the love of my life.

I went on to have five surgeries until it became clear that the grafts were never going to work properly.  It was decided that I needed to have my collarbone completely removed.  So, two weeks ago, on 14 May 2015, I went down to theatre to have it taken out.  I can honestly say that I was utterly petrified!  A few hours later, I was in recovery and I was in far less pain that I had imagined.  After a few days, I was allowed to leave hospital and go home to continue to recover.

I’m getting stronger every day and I am amazed by how little pain I’ve had.  I still have a long way to go, but I’m getting there!

But, I’m not done there!  From something so painful, was born something positive.  Some time ago, someone told me to cover my scars, in case “I offend someone!”  Well, I thought, “Stuff that!” and I decided to make it my personal  mission to help to stamp out negative body image.  Hence, Sport Your Scars was born!  I set up a Facebook page and I posted a photo of my scars.  The response was amazing!  It’s only in its infancy, but I truly believe that scars do not define us and that EVERY woman is beautiful, irrespective of her shape, size or skin tone.

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If you’d like to follow my story, you can find me on Facebook or follow my video log on YouTube here: https://www.youtube.com/channel/UCLgMCfg-HVY1xms6iBVvR8Q

Also, you can lend your support to the #SportYourScars campaign by backing our Thunderclap here: https://www.thunderclap.it/projects/26780-sport-your-scars?locale=en

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Guest Bloggers For TSC Awareness Month, Tuberous Sclerosis

Identical Twins Diagnosed With TSC

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Day 27 of Blogging for TSC Awareness

by guest blogger Jobina Antochow-Piekema  (Clairmont, Alberta, Canada)

2012-11-09_16-31-07_926At our very first ultrasound we were given the great news we were expecting mono/di (identical) twins.

During a routine ultrasound at 25 weeks, we were told the twins both had cardiac rhabdomyomas and a possible diagnosis of tuberous sclerosis. At 28 weeks pregnant after fetal echos, ultrasounds and meeting with a geneticist she recommended we transfer to the USA and have an abortion as we were given the absolute worst case scenario of TSC. I immediately said no…these boys were moving, growing, and thriving inside and we knew we would take our twins however God chose to give them to us.

I was put on bed rest due to high blood pressure and stress. At 31IMG_8916297196671 weeks I was flown to Edmonton, Alberta Canada from our home in Grande Prairie, Alberta and at 32 weeks on September 23, 2012 I delivered our identical twin boys via emergency c-section. Layton Dale was born at 10:58 pm and at 10:59 PM Landon Walter arrived. After seeing them briefly they were whisked away to the NICU for evaluation. They were doing well and holding their own. Layton spent 35 days in the NICU AND Landon 41 days.

Life at home was an adjustment, but we managed until we had a follow-up cardiology appointment around 6 months of age and were told their hearts were still strong and the cardiac rhabdomyomas were not affecting their heart function. We began to breathe a little easier. The cardiologist believed the twins were in the 30th percentile that did not actually have TSC.

So life went on! We lived, we thrived! We lost my dad to cancer in March of 2014, twelve days after I married my husband. Then two months later we lost my husband’s grandma. It was an emotional rollercoaster. As things finally started to somewhat normalize, we had a follow-up with the twins’ neurologist who wanted to book them an MRI but believed they were in the clear. We left Edmonton happier than we had been in months only to have our world crash down around us ten days later.

We were camping and Landon woke up from his nap having what we assumed were seizures.  We knew right away…we hadn’t escaped TSC. We called 911 and we were life flighted to Edmonton. Watching my son cluster seize for 45 minutes at a time changes a person. After ten days in the hospital, CT scan, kidney ultrasound, opthomolgist, and MRI we were told by doctors tuberous sclerosis.  We knew…it wasn’t a surprise, but at the same time it was a shock. We asked so many questions, we cried so many tears,  we were worried about Layton. Genetics met with us to do blood work to see the test to identify the gene mutation in the twins…spontaneous TSC1 is their official diagnosis.

FB_IMG_1423273687587We were discharged not having the seizures under control, but once we had control we went almost five months seizure free. Then the seizures started coming back, but they were different. At first I doubted what I was seeing, until I looked into my precious little boys’ eyes and knew. We added another med and have seen great success.  We are almost six months seizure free.

Landon is progressing well all things considered. He has heart and brain involvement and some ash leaf spots. Layton has been cleared of any cardiac rhabdomyomas and has some ash leaf spots.

We have lots of appointments we have to travel for. We have no idea what tomorrow will bring. I am slowly starting to let the twins out of my safety bubble. And I am slowly starting to become somewhat human again. Having to grieve the loss of my dad, my husband’s grandma and my healthy children has taken a huge toll on me…all I want is to be the best I can be for my boys. We always pray for a mild case of TSC but know it is all in God’s hands.

Honestly,  some days it all feels like a bad dream. I wish I had the cure. I have met some amazing moms through the TS Mommies group on Facebook, and although we are miles apart, these woman have become my friends, my family and my go-to people! I treasure you all.

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#iamtsc #tscawareness #tscwarriors #piekematwinstscjourney #punchtscintheface
Guest Bloggers For TSC Awareness Month, Tuberous Sclerosis

For the first time in my life, things were not in my control.

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Day 21 of Blogging for TSC Awareness

by guest blogger Debdatta Bhattacharya  (Portland, Oregon)

I had always been in control of my life. I faced challenges but I knew if I work hard I will get over them. I was born in India into a loving family and had an amazing childhood. After I completed college I wanted to come to the U.S.A. for pursuing my PhD in physics. My parents were not happy with my decision because it was so far away from home. But I was adamant; it was my life right ? After a couple of years of coming to U.S.A, I married my college sweetheart. Six years later, both of us got well paying jobs at Intel in Portland, OR. Life was good. Finally it was time to sit back and relax and enjoy all those years of hard work at grad school. In 2010, our first born, our daughter Bartika arrived in our life. Oh what a joyful time that was, the exhausting but delightful days of nurturing her and caring for her, the ecstatic feeling of bringing new life into this world.

In 2013, I got pregnant with my second child. We found out it was going to be a boy. Everyone was excited, “oh you will have one of each”. We personally didn’t care; we just wanted a healthy child. I started planning, like I have for all other major events of my life. We sorted through all our daughter’s toys, separating infant toys from toddler toys, packed them in separate bags. I hired someone to help me out in the first few weeks after baby #2 arrived. I can’t believe it now; I even almost planned the weekly menu with her so that there would be one less thing to do.

On my 37th week of my pregnancy, we went for a routine ultrasound. I was excited to see him one last time before actually holding him in my arms. After the ultrasound, my doctor came in the room and told us “there is something wrong with the baby’s heart.” Those words and her voice still ring in my ears. We were quickly packed off to be seen by a neonatalist. He had no idea what was going on other than the fact that my baby had unusual thickening in the wall of his heart. We were told that there is no guarantee he will make it out of my womb. Such cruel words told with such heart wrenching indifference. I felt like someone just stabbed me in my chest. My child was still kicking inside me; how could any of this be true? Later that night, we got a call from a pediatric cardiologist. He said it looks like your baby has “tuberous sclerosis” (I first thought he said tuberculosis). That was the first time we had heard this term. The doctors wanted to do a c-section, but they wanted to wait a few more days to give him a chance to grow a little bigger. The little signs around the house that showed our readiness to welcome the new baby came back to bite us. The new baby clothes delivered at our door step, the unopened car seat, the toys, the laid out crib seemed to mock us. For the first time in my life, things were not in my control.

The inevitable question of “why me” kept me awake at night. We were told “law of nature” by the doctors. But we had been good to nature, recycling, reusing, installing solar panels, driving a Prius, you name it, then why us? We have given to charity, been reasonably polite with everyone, been sincere and honest in our job, then why was our dream of a perfect life being shattered so ruthlessly. I haven’t found any answers yet. But with time I have realized that most people are basically good and nobody deserves to go through this pain. But life happens and other than gracefully accepting it we don’t really have much of a choice.

blog-2We had a faint idea that TSC could affect our child in multiple ways but at that point of time we were concentrating on his heart tumors. We went to Seattle Children’s Hospital so that he had all the heart surgery options if he needed any. My beautiful boy Arij, was born on 7th April, 2014. Miraculously he did not need any surgery or medication. All the doctors had told otherwise but he proved them wrong. It was overwhelming because my arms were empty and my baby was in cardiac ICU (just in case) and a bunch of MRIs and ultrasounds were being performed on him. I had about 48 hours of absolute happiness till the doctors came back and told us he had tumors in his brain. For the first time after his diagnosis, I opened the internet and started reading about TSC. I had intentionally stayed off because before his delivery there was nothing much to do with all that information anyway. I saw terms like, seizures, developmental delay, mental retardation, autism, mentioned in a matter of fact way all across the internet. My heart sank and I cried and cried. Was I not allowed to enjoy even a few hours of my baby’s presence before being engulfed in worries again? While I recovered from my c-section, I tried to make sense of all this information. We came back home after staying for 12 days in the hospital. The first night we spent at our home as a family will always be etched in my memory. It was such a happy feeling to be home as a family for the first time, no hospital smell, no monitors, no doctors.

My husband spent the next few weeks in doing extensive research on infantile spasms and what it looked like. We had realized that we can’t control everything but we will control whatever little we can. We installed a motion detecting video camera over our son’s crib so that we could detect the first signs of infantile spasms. We prayed that we never detect anything but unfortunately around two months of age he showed some early symptoms of infantile spasms. He was started on sabril and everything was under control again. I took time off from work and took care of him. A bunch of therapy sessions started around 4 months. He was doing wonderfully till he was about nine months. That is the time when new seizure activity started. More tears, more heartbreak and more panic followed. He started falling back developmentally. The local neurologist was unable to control his seizures. Arij being his sweet self, of course just smiled through this all. We finally decided to take him to Cincinnati TSC clinic. I am so glad that we took that decision. The medicines were changed and he was put on new medicine. It took a while for him to react positively to the medicines. Patience is not my forte but life taught me to be patient. He is doing much better now but he still has some seizure activity. He is still delayed developmentally but he is making steady progress. We celebrate all his milestones. We have learnt to find happiness in the smallest of moments. We are going to start him on afinitor soon with the hope that it will control the remaining seizure activities that he is having.

blog-4It is still difficult for me write down the positive aspects of this experience. I have lived most of my life without TSC and I was quite happy. TSC has taught me a lot of things but I wouldn’t have minded leading the rest of my life without these learnings 🙂 One of the key things is of course that I have to let go of things and situations and I can’t control everything. The other is patience. I keep working with my son on a certain skill, day after day without seeing the desired result. But when I get there, I can’t describe the satisfaction and sense of achievement that I get. I also got to know the true color of many of my so called friends. Some have abruptly discontinued all contacts with me and some have stepped up to give me emotional support. We will continue fighting this battle with Arij. Amidst all these uncertainties, there is one certainty; he will always be surrounded by unconditional love.

Guest Bloggers For TSC Awareness Month, Tuberous Sclerosis

The Great Seizure Wait

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Day 12 of Blogging for TSC Awareness

by guest blogger Hannah Lorraine  (St. Louis, Missouri)

I was standing in the nail polish aisle in CVS when I got the call.  I rarely ever paint my nails, so that was odd enough, but getting a personal call from my OB was even stranger. She had news, she told me. They saw a mass at our 20-week ultrasound.  In her heart.  Maybe nothing, maybe serious.  A specialist, she said.
And I don’t remember taking in a real breath after that for a very long time.

Elise 3 daysI held my breath through the first appointment with the cardiologist when he told us he saw not one, but two tumors taking up a large area, one in each ventricle. I held my breath three weeks later when one of the tumors grew so large that they sent us to consult with a surgeon.  I held my breath through learning the ins and outs of what heart failure looks like and praying I’d make it to at least 30 weeks without seeing any signs of fluid build-up around my baby’s tiny heart. I prayed and wept and pleaded with God that he would have mercy. I had so many ultrasounds, I learned how to look for all the markers myself. I always felt so relieved to see her heart pumping away, the largest tumor dancing inside rhythmically.  I saw her little hands, always in the fighter position, a good sign I thought.   I held my breath when they told us that she probably had a genetic condition that caused the tumors and that she could have them in other parts of her body as well. And still she kept growing and thriving.

Through the incredible fog of hope, confusion and fear, I gave birth, Elise 4 monthsagainst all the odds, to an otherwise healthy, full-term baby girl. Not to a genetic disorder, not to a defective heart, but to a person. One whom I had loved so intensely through it all, but had only just begun to know. A person with my eye color and her daddy’s chin and a personality as unique as her fingerprints. A person with countless other genes besides the broken one–all making up bits and pieces of the whole beautiful baby that is my daughter. And I am so unbelievably grateful. To know her, to have her as a part of my life. To have the honor of being her mother and walking with her through life. I can barely remember what I was thinking before the day that 2015-05-06_14.20.48everything changed, before hope and fear became two almost indistinguishable sides of the same reality for us.
Then a part of me shattered when we found the tumors in her brain, too. Oh, please, God, not her brain. The diagnosis was confirmed now: tuberous sclerosis.  I had never heard of it before this, never met anyone with those kinds of symptoms.  Sometimes I look at her soft, fuzzy head and cry, wondering how it could be filled with tumors when she looks so normal, so beautiful.

Elise is now seven months old and our waiting game has changed.  Instead of worrying about her heart, we wait and watch for the seizures that usually result from the brain tumors she has. Every day that goes by without one is a joy. No healthy moment is taken for Elise 3 monthsgranted.  Elise is growing and developing beautifully.  She is babbling and sitting unsupported and already crawling.  I have learned to enjoy these healthy days, and yet in my weak moments, I find the familiar fear returning and worry that she will lose the milestones she’s gained. I worry that someday seizures will steal the clarity in her eyes and dull the sparkle from her smile. And so we wait. And refuse to let it define our lives.

We had an EEG this week that showed a number of spikes while Elise was sleeping, upping our concern and our seizure watch. Our neurologist told us that if those spikes turn into seizure activity, the likelihood is that it’s going to happen in the next few months. Statistics are not our friends, but they are not our story either. I am scared and sad, but I refuse to allow the seizure wait to steal my joy in the healthy days. My girl is a fighter. We decided to name her Elise so that she would always know that she is “dedicated to God” and that God is her strength, no matter what suffering she might face. None of us are certain of our tomorrows, but we will rejoice in gifts we have been given today. And carefully watch and wait.

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Guest Bloggers For TSC Awareness Month, Tuberous Sclerosis

One Hour At A Time

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Day 6 of Blogging for TSC Awareness Month

by Anonymous  (London, England)

I had a pretty normal pregnancy; all of our scans and tests showed that our beautiful boy was growing normally and we had nothing to worry about.

Our 36-week scan would be our last chance to see our boy before he made his big entrance into the world, so we were very excited. Little did we know that November 13, 2014 would be the day that our world would come crashing down.

“I see a tumour in the baby’s heart. I am going to ask a doctor to come in to double check,” said the sonographer. Within 10 minutes I had four doctors in the room, confirmation of several tumours and a probable diagnosis of tuberous sclerosis. I had the legal right to terminate, mental retardation, epilepsy all thrown at me by the doctors and I couldn’t utter a word. But inside I was screaming. This wasn’t happening to me; any minute now someone will say a mistake has been made, but unfortunately that minute never came.

The following week a fetal MRI showed brain tumours and a tuberous sclerosis diagnosis was confirmed.

I spent the next four weeks reading everything I found on the internet about TSC and I cried like I had never cried before. My heart ached for my baby, and it ached for my husband for losing the normal healthy son he was so looking forward to having. I resented every healthy baby and all the mothers that would never experience this overwhelming pain. Most of all I hated myself for being healthy but carrying a baby that had a disease that had no cure.

Eli was born on December 15. We had accepted his diagnosis and had great hope that we might be one of the lucky ones and his case would be a mild one. Once again God had other plans for us. Eli started having seizures from birth. Doctors gave us worst case scenarios and told us that the likelihood of Eli being a severe case was high as he presented with seizures so early on. That night I begged God that whatever Eli ends up with, please don’t take him away from me. To this day I refuse to ask the question about his life expectancy.

Eli is now 4 and half months old, we are at the beginning of our journey and the road ahead of us is long , there are many uncertainties that lie ahead.My heart breaks a little more with every test Eli has. People tell me that I’m strong but I don’t see what other choice I have. My son needs me to be strong for him. He needs me to fight this disease and not give up.

With every milestone that Eli meets my heart soars with happiness, but at the same time a crippling fear overtakes me; one big seizure and he could lose it all.

One night when I felt nothing but despair, a mother of a TSC child told me to take it an hour at a time and not think too far ahead. At times I catch myself looking at young boys out and about and wonder if my Eli will be like them? Will he ever talk, walk or have friends, but then I have to stop myself and come back to the here and now.

My boy smiles at me when he wakes up in the mornings and for that I am eternally grateful.

 

Guest Bloggers For TSC Awareness Month, Tuberous Sclerosis

“If you spend too much time waiting for the storm, you’ll miss the sunshine.”

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Day 5 of Blogging for TSC Awareness Month

by guest blogger Amy Dublinske  (Kansas City, Missouri)


kier06“If you spend too much time waiting for the storm, you’ll miss the sunshine.” A wise quote to live by, though easier said than done when battling a chronic illness.  Realistically, with the tribulations of tuberous sclerosis complex it does feel like you are always waiting for the other shoe to drop, waiting for the train that’s about to hit you or walking through a land mine.  Our journey with TSC officially began one decade ago today, 05/05/05.

Cinco De Mayo is the ultimate celebration in the United States and kier03-2Mexico.  A day observed to commemorate Mexican army’s unlikely victory over French forces.  For the past decade Cinco De Mayo has carried a new meaning for me and my family.  On May 5th, 2005, our precious daughter Kierstin Gabriella was born….with tuberous sclerosis complex.  May 5th now marks the day we officially entered “The TSC Club.”  The dreaded diagnosis that we truly feared that may just become our reality.  Cinco De Mayo has truly been a bitter-sweet day for the past ten years.

kier09While pregnant, doctors told us that there was a 50/50 chance that our baby girl had TSC due to numerous cardiac rhabdomyoma tumors.  We researched TSC.  We talked to several TS families but were plotting out how we would tell them the day that they determined that our baby “really didn’t” have this awful disorder after all.  Denial is a happy place, Right?! Unfortunately that day never came and we were officially inducted into “The Club.”

I can clearly recall the cardiologist trying to gently explain Tuberous Sclerosis to this very pregnant mom-to-be for the first time ever hearing those words uttered. Though his English was broken, the one thing that was abundantly clear in any language were his words “we hope it is not Tuberous Sclerosis.  This is a very grim diagnosis.”  The words “brain tumors, heart tumors, kidney tumors, mental retardation and there is no cure” were also communicated rather clearly.

When leaving the hospital, while nearing the elevator I witnessed a mom pushing her infant daughter in a stroller.  She began lifting her in the air and playing peek-a-boo with her to the point of the baby belly laughing.  I suddenly became weak in my knees and collapsed right there on the floor at over eight months pregnant. It suddenly struck me that we may never have this with our baby girl or may never experience the privilege of hearing those belly laughs.  How could this possibly be happening to us and to our precious daughter that we longed for years to have? We had so many hopes and dreams for this little one and all those dreams seemed to be suddenly shattering with just one sonogram.   I think at that very moment I knew in my head that she had TSC, yet my heart wasn’t willing to accept it.  The next month is a complete blur as we prepare for the unimaginable while still holding onto a small shred of hope that they might be wrong.

Essentially, May 5th doctors confirmed what we dreaded and the medical journey which was filled with much uncertainty began.   She was induced with the anticipation of open heart surgery given large rhabdomyoma tumor growth.   Though her heart was more stable than initially expected, we quickly received the dreaded diagnosis of TUBEROUS SCLEROSIS.  All of her organs were affected with tumors at birth.   We were devastated beyond words!  A short glimpse of the journey begins with evaluating every organ by a new “ologist.”  Countless appointments, numerous medications, relentless seizures, years of therapies, multiple hospitalizations, brain surgeries and weeks and weeks and weeks advocating and educating about this diagnosis that I have quickly become an expert on is what our “new normal” consisted of.  No one imagines their baby struggling to reach the most basic of milestones like rolling over or sitting up.  Who plans their family vacation destination in conjunction with medical appointments with specialists from across the country?  Every parent of a child with special needs grieves their child’s diagnosis at one point in time.  I remember silently crying in the shower in the mornings, so that no one would hear me.  I am ashamed to admit that I have never completed Kierstin’s baby book. Every time I would try it would be a reminder to me that she had not met any of her first year milestones, or if she did, briefly she would lose the milestone with the next seizure.

If I knew then what I know now, I would definitely have spent more time in the sunshine and less time waiting for the storm.   “The storm,” which was more equivalent to a never-ending roller coaster ride with some of the most gut-wrenching twists and turns you can imagine, has taught us how to live in constant chaos and crisis so to speak.  This journey and particularly Kierstin has taught me more about life than anything else I have ever experienced.  Throughout the years I have had dozens of people say “You are such a strong person, this must be why you were chosen to be Kierstin’s mom.”  Being strong is the ONLY option.  We refuse to allow TSC to define our daughter, but more importantly SHE refuses to let TSC define her!!

royalsKierstin has taught me unconditional love to a higher degree than I ever thought possible.  Though my dreams of having my first born daughter are much different than today’s reality, I have so much to be thankful for.  This journey with TSC is not quite the journey of my dreams; though Kierstin is the daughter I have always dreamed of!!  This year we celebrate Cinco De Mayo thankful for God choosing us and mostly trusting us to be her parents.  We are eternally blessed and thankful for this privilege of meeting our hero on May 5th of 2005.  Many people dream of someday meeting their hero, but fortunately I gave birth to mine!! So after a decade battling TSC, Cinco De Mayo is now my day of celebrating my HERO!! Enjoy the sunshine, forget about the storm.  And Always Remember: We Will Give Everything!  But Up!!

kierstin flowers

Guest Bloggers For TSC Awareness Month, Tuberous Sclerosis

You are not winning, TSC.

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Day 2 of Blogging for TSC Awareness Month
by guest blogger Mary Garnett  (Roanoke, Virginia)

10530697_10152504883715700_7231308209995918033_nI was just 24 weeks pregnant when the words “tuberous sclerosis complex” were muttered to my husband and me, and pamphlets about this disorder were thrust into our hands by the doctor. They found cardiac rhabdomyomas on my otherwise healthy baby boy in utero. From that point on, I had biweekly monitoring by multiple doctors, scanning every bit of our child to detect any other marker of TSC and they did not find anything, even after a fetal MRI.

Our little boy, Owen, made his appearance on March 16 at exactly 1619175_435903126574175_3888823022529246311_n40 weeks. Everything about labor and delivery couldn’t have been more perfect and our son scored wonderfully on Apgar and hearing. After four days and some NICU monitoring, we were able to take our little man home to enjoy. We didn’t realize how soon that would change.

Three and a half weeks later, I began noticing a twitching of Owen’s r11046409_447237978774023_1711788437182916419_night arm. I had done my research on TSC and the different types of seizures I should be on the watch for. Intuition was telling me these WERE seizures. My husband was more optimistic, but the twitching was increasing, so off to the pediatrician we went. Following that appointment, we were immediately sent to be admitted at the hospital after our pediatrician got to witness what I had been seeing all along.

Multiple tests including a lumbar puncture and bloodwork came back normal. It was not until a VEEG was done that we got our confirmation that these were indeed seizures. A brain MRI the next day then officially diagnosed our son with TSC after finding multiple tumors in our son’s brain. You know when four doctors, a chaplain and social worker walk into your hospital room at the same time, that the news can’t be good. Owen was started on his first anti-epileptic medication that same day. We were thrilled when it worked from the first dose and were excited to go home, thinking this was the end of seizures for Owen. That medication worked for three days.

Multiple seizure types, six medications, one diet and one brain surgery later…

Owen is now 13 months old and experiencing freedom from seizures for the first time since he was a newborn. How has someone who just celebrated their first birthday been through so much already? How does he continue to smile and play despite seizures wreaking havoc on his development for 11 months? Because this kid has strength and spirit that only God could bestow.

We don’t know what the future holds for Owen, but we don’t care. He has taught us that no matter the battle, the strength to continue on will always be there for him, and for us that is enough. You are not winning, TSC.

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