Naperville Senior Photographer, Chicago Special Needs Photographer | Nate

I had the pleasure of meeting Nate recently.  He is a senior at Naperville Central High School, and he has a rare genetic disease called, Tuberous Sclerosis.  Tuberous Sclerosis causes benign tumors to form in various organs of the body. It causes seizures, developmental delay, behavior problems, and autistic-like symptoms. Nate has tumors in his brain and kidneys, and was born with two tumors in his heart that went away by the time he was two.  Another side effect are micro tumors on his skin, giving a bumpy appearance on his face.  But Nate is fully of smiles – on his good days.  He has an engaging and glowing smile.  Though he has few words, he really enjoyed our time together, as did I.

I asked Nate’s mom to write a bit about Nate and their experience, as I know many of our readers would like to learn more about his condition.  So the below is in his mom’s words:

“Our adventure with Nate started with his birth on a hot September day. We knew ahead of time that he was going to have a disease called Tuberous Sclerosis.  Nate started having seizures when he was 6 weeks old and then went on to have infantile spasms at about 6 months. The spasms were very bad and took several months to get under control. They caused him to have a right sided weakness and we believe this is what caused a lot of the damage to his brain.

Nate was a pretty happy baby. He did lots of laughing and had a great smile. He was very entertained by his big sister, Rachel, who also had the same disease.  She had a slight speech delay and her seizures were under control. We had no idea that Nate would have a more severe form of the disease. Sadly, our Rachel passed away when she was 3 1/2, from what doctors believed was a seizure.

Nate didn’t start walking until he was 2 1/2, but once he figured it out, he was on the move! His seizures were under control, except when he had a fever.  His seizures wouldn’t stop on their own without medical intervention, and we had several trips to the PICU. He was a little flirt with the nurses. When it was all over, you would never know he had just been in the hospital.

Around age 4, his seizures worsened again, and we really have had no seizure control since then. He had a Vagus Nerve Stimulator implanted to see if that would help. It was finally removed over a year ago with out any changes to his daily seizures.

We have had many ups and downs since then, like behavior problems, different types of seizures, and just your normal kid stuff. It is so hard to believe he is now 18. I look back over these years and see that God made him a very tough kid. He continues to amaze us with the way he bounces back from seizures, falls, and just plain life.

Do I wish he wasn’t born with Tuberous Sclerosis? Yes, but, I can’t imagine the wonderful people we have met on this journey, that we wouldn’t know otherwise. I am grateful for all the wonderful people that love my son and choose to hang out with him. It’s so cool that  they can see past his disabilities and see the happy, silly, smiley boy that is Nate the Great! (That’s what his peer buddies call him from his adaptive PE class).”

If you would like to learn more about Tuberous Sclerosis you can visit their website. It’s www.tsalliance.org.

Developmentally, Nate is at about a three to four year old level and suffers from seizures many times per week, but as his mom said, he is a joy.