Tag Archives: Michigan

I like to think that God has given me other gifts to make up for me having such a rare disease.

Second Annual “Blogging for TSC Awareness Month” Day 23

by guest blogger Kate Carter  (Ann Arbor, Michigan)

297781_1483085518122_1098623929_nI was diagnosed with tuberous sclerosis back when I was 2 ½ years old. I am now approaching my 22nd birthday. So, I have lived with TSC as long as I can remember but I haven’t let that stop me. As far as we know there is no genetic link so it’s just a mutation that happened to pick me. I have seen many things through my times at hospitals for annual visits. I remember being in one of the early MRI machines and watching the improvements in research and other medical developments. Sure, things got tough at times but I always maintained a positive attitude. I am very luck to have a “mild” case of Tuberous Sclerosis but still very affected. If it weren’t for such an active lifestyle and healthy diet, I wouldn’t be this “well” off. But through it all, there are still challenges. In my 8th grade year I suffered a grand mal seizure that lasted 90 minutes. I came away with no brain damage but still managed to get the flu. Somewhere up there someone is looking out for me. I haven’t had a specifically labeled seizure event since then. I have things that we are calling “spells” because they aren’t sure. It’s a mix of anxiety attacks and seizures but not bad enough to make me unconscious. It is very frustrating to not know what these things are and know how to treat them. I often think though, my life could be so much worse and I know all us TSC suffers all have things we 1450206_10201859552184922_1568234232_ndon’t understand. The world doesn’t understand. I hope that continues to change.

Of all the challenges, my learning disability has been the most difficult thing for me in terms of this disease. Some days I would remember things and
others I would draw a complete blank. I can’t thank my teachers, professors, coaches, and parents for helping me thus far in life. Since I just graduated from college, it is time to begin the next chapter in life and to learn to live on my own. Throughout my life I have never felt like I wasn’t “normal.” I like to think that God has given me other gifts to make up for me having such a rare disease. I have excelled athletically. In high school I was nationally ranked in the 800m by my senior year and all-American on relay teams. All of that lead to the wonderful scholarship to my respected university, my coach had no idea what my disease was but took a chance on me and I can’t thank her enough. Just because I 31393_1494934937388_733010_nhave a certain disease doesn’t mean I can’t do things like my peers. My parents have been by my side from day 1 but have to slowly pull back because I’m aging and have to take on my own responsibilities. I am both excited and nervous for the leeway. Wondering what will happen next, but I figure if I’ve made it this far. I’m sure I’ll be just fine.

To all those that are younger than me and or parents, I suggest if able get involved in sports. That has kept me healthy in more ways then one and always looks at life positively. Sure times will get tough and you will have breakdowns but just know there is always a tomorrow and another challenge to master. Always surprise. Let’s make the world aware of us.





He is happy. He is loved.

Second Annual “Blogging for TSC Awareness Month” Day 12

by guest blogger Shannon Arndt   (Newport, Michigan)

first placeBladen.  For so long Bladen was my imaginary child.  You see I had his named picked out before I even met his father.  As soon as I heard the name, I knew.  This would be the name of my son one day.  I envisioned a strong boy, popular, good-looking and with a pretty awesome name.  Once I met my husband, Russ, we couldn’t wait to have our first child.  We started trying to get pregnant on our wedding night.

My pregnancy had gone pretty smoothly.  I worked, ate and enjoyed telling anyone willing to listen that I hoped to have a boy.  And as luck would have it, we found out we were having a boy!

Around 31 weeks, I had been running around, arrived late to work and just didn’t feel right.  I called my OB and he said to come in.  They couldn’t get a good heartbeat and said I was really dehydrated so off I went to the local hospital.  There they hooked me up to IVs for fluids and I got to see my baby again via ultrasound.  The doctor said everything looked good but wanted me to come back to see a perinatologist.  We made the appointment and two days later Russ and I were at the appointment excited to see our baby again.

I remember joking around, laughing, looking at the pictures.  Clueless to the technician leaving the room, getting the doctor.  The doctor hadn’t said anything, probably because I was talking so much.  And then it happened.

Another doctor walked in and said, “How many tumors are there?”

I couldn’t speak, I looked at my husband and we both just started crying.  We were handed a copy of a page out of a medical book.  Tuberous Sclerosis Complex.  Not only our lives changed that day, but I changed.

Our son had rhabdomyomas in his heart.  Tumors that were growing in his little heart.  For six weeks, I was monitored twice a week by high-level Daddy and Bladenultrasounds.  Waiting, waiting to find the right time.  I spent my time scouring the Internet for any information and crying, mourning, worrying, feeling toxic to my own child.  Timing was key.  We wanted him to grow and not have other complications, but not too long or he’d go into heart failure.  At 37 weeks, it was time.  His heart started developing fluid around his heart, a sign of heart failure.

The next day, with about 20 doctors in the room, I had a 8lb 2 oz, 21 1/2 inch long baby boy.  His heart?  Well, I literally squeezed the fluid out!

At 5 months, he had his first seizure and shortly after, I quit my job.

I’d spend most of my time going to doctor’s appointments, playgroups, play dates, swimming, anything that would help my son.

12 months, he crawled.

16 months, he walked.

He went to OT, PT and eventually speech.

bladen before surgeryHe’s had numerous EEGs, overnight EEGs, MRIs and ultrasounds.

He went to a special needs preschool at 2 1/2.

A month before he turned 5, he was potty trained!

Two weeks after, he also had brain surgery to remove a SEGA brain tumor.

He started mainstream Young5 with a para-pro.

Then was diagnosed with ADHD.

He started mainstream Kindergarten with a para-pro.

Then was diagnosed with anxiety.

He is currently in mainstream 1st grade with a part-time para-pro for his anxiety.

And, he has made honor roll every quarter so far!

He has friends.

He is happy.

He is loved.

We still have bumps in the road.  We are currently watching another SEGA brain tumor; he has MRIs every 6 months to monitor.  He has a lesion in his eye, cyst in his kidney, tumors still in his heart, epilepsy, ADHD, anxiety, speech delay and with Tuberous Sclerosis Complex, the list will grow.
However, he’s been seizure and seizure med free for a year and a half.  He is currently unaffected by the lesions, cyst and tumors in his body – meaning, he is not suffering.
Bladen is a tall, funny, handsome, smart, loving 7-year-old boy.  And just as I imagined before he was born, he is STRONG.
Family walk

Life With Ricka

Andrea and Ricka ice skating.
Andrea and Ricka ice skating.

Day 11 of Blogging for TSC Awareness Month

By guest blogger Andrea Hubert  (Willis, Michigan)

Everyone has their own story to tell when dealing with TS.  I was too young when Ricka was born to remember how things all went.  I only know them as related by our mom.  Ricka’s TS seems to be a random genetic mutation.  However, that didn’t mean anything when our younger brother began having seizures at the age of 24.  It took many months and several neurologists before they could figure out what was wrong.  Finally someone ordered genetic testing, and he doesn’t have TS.  He has an unrelated seizure disorder caused by something in his brain that was triggered by the long term use of Ultram (tramadol) for serious back pain.  No one tells you that a potential side effect of the medication is seizures, do they?

So, back to Ricka.  She is very severely affected by TS, with autistic tendencies, a mental age of about 15 months, and lots of different kinds of seizures everyday.  Both of her hips and her nose have been broken.  She’s had more stitches, staples, sprains, bruises and bumps than anyone else I know.  She used to be able to walk, but is now too scared.  At school they called her “the escape artist.”  She learned how to open doors, and she was so quiet they eventually had to put bells on all the doors in her building.  I think at one point, she wore bells so they could always find her.  Thankfully, she has never disappeared when I was in charge of her.

For me, life with Ricka is just my normal life.  It’s what I’ve always known.  With only 18 months between us, I was too young when she was born to have learned much about life without her.  The things that I’ve learned when dealing with TS have kept me on my toes as I go through my own health problems, back surgery, and further treatments.  I know when to fight and when to stop.  I know to always be ready for anything.  As a child, I always kept a bag packed with enough materials to keep me, Ricka, and our brother entertained for up to several days.  We never knew when we’d be headed to the hospital, and there wasn’t time to waste gathering stuff to do.  We also didn’t know when someone could come pick up my brother and me, so we had to be ready to stay at the hospital too.  Advances in technology have made it so much easier.  My laptop, Kindle, an iPad with movies on it for Ricka, snacks, and a charger for everything is enough for us now.

When we were young, before my brother was born, Ricka was in the hospital so much that I was allowed to walk around the hospital alone pretty often.  Nurses and other staff members recognized me.  My mom is still proud of the fact that I never got lost and could direct other people around.  Maybe that’s one of the things that helped shape my good sense of direction now. Who knows?

I grew up pretty fast thanks to Ricka’s TS.  I have always been her caretaker, and at nineteen, I became one of her guardians.  It’s a scary thing to be in charge of someone else, but even more so when that person is your sibling, close in age, and so medically needy.  Today, almost nothing freaks me out because I’ve probably seen it in my journey with Ricka or the other folks that I’ve been lucky enough to work with doing care for families.  There are positives and negatives to growing up fast and seeing so many things.  Some days, positives outweigh the negatives, and some days it’s the other way around.

I don’t know what the future holds for Ricka.  I do know that she will always be loved and cared for at home by people who love her.  I know that if something happens to our mom, I will be solely responsible for her.  My brother lives nearly 2000 miles away and doesn’t want to be involved anyway.  I know the importance of planning ahead now.