Nahia is Ty’s oldest sibling. She is 10 years old and for her school end of the year project decided to write about what it’s like to have a brother with Syngap. She hopes to read more articles from other Syngap siblings.
Hi today I want to talk about my little brother Ty.
Ty is a really special kid because he has a rare genetic disorder called Syngap and there is only 500 kids in the world that we know of that have Syngap.
Because of Syngap his brain works differently from other kids.
It takes him longer to learn new things (except when it comes to trouble, that he gets instantly) and he has to do to a lot of therapy.
Ty has sensory issues which means that he doesn’t like certain sounds and he needs a lot of movement and touches. For example he hates the sound of the turning signals in the car and we have swings, trampolines and crash mats in the house. When his sensory system is out of wack his brain is a mess and he bangs his head on the floor.
The hardest part for me with Syngap is that he can’t speak even if he really wants to. He only says a few words but tries really hard to tell us what he wants.
The other hardest part is that he has seizures and that scares me a lot. Some of Ty’s seizures are when his eyes roll mainly when he eats or is tired. He also has absence seizures which is when he is awake but not there. He had a grand-mal seizure once and his longest seizure lasted for 1 hour when we went to France. That was very scary! Ty has a rescue medicine to stop long seizures and after my uncle who is a doctor gave it to him, the seizure stopped but he still had to go to the hospital.
He takes seizure medication everyday and that helps him a lot and has seizure cameras in his room to make sure he is safe at night.
Ty loves a lot of things like swimming, listening and playing music, playing with his toys, jumping on the couch, trampoline and his bed, giving kisses, hugs and driving around in the car. He is funny, smart and loving.
Having a brother that is special is not always easy but he is funny, smart, amazing and loving and I would not trade him to be normal but I do hope that they find a cure to help make his life easier.
If you ever meet someone that is different then please take the time to get to know them and be nice to them.
You can learn more about Syngap at www.syngapresearchfund.org
And follow my brother’s adventures at: www.facebook.com/supersyngapian