Because Tyler was our first child, we didn’t exactly know what was normal and abnormal. At 6 months old, he kept having repeated head, arm and body spasms. When these spasms started to increase daily, we began taking him to different doctors until we finally found one that was familiar with what he called “infantile spasms”— and Tyler was diagnosed with Tuberous Sclerosis Complex (TSC).
We were devastated.
Tyler looks normal, yet he is anything but. Tyler is non-verbal, mentally handicapped and incontinent. He has intractable epilepsy, autism and tumors on his organs that have to be scanned annually to make sure they haven’t grown and don’t need to be removed.
However, Tyler is SO loving.
Our younger boys are finally beginning to understand their brother’s illness, but there are still times they get angry because we are limited to what we can do as a family. We never want to risk over-stimulating Tyler, and sometimes it’s impossible to manage the arrangements needed to take Tyler with us.
The emotional impact that Tyler’s condition has had on our family is indescribable. Doctors tell us that Tyler is expected to have a normal lifespan, but he will always be prone to having random seizures at any time.
It’s hard for me as a mother to cope with the stares that people give Tyler when we are out. He’s so cute, but people can be so cruel. Tyler’s dad copes better than I do, but I’m working on it.
We were first introduced to Starlight when we saw a flyer last year at the TSC clinic at Scottish Rite. Thanks to Starlight, a door has been opened for my family to do things with no special arrangements needed from us and no stares from others — and the attention they receive makes all of my boys feel so special. Starlight allows us to do things as a family that we couldn’t do before.
Once, Starlight invited us to go ice skating at the local mall. Because the rink was shut down for a couple of hours, we were able to take Tyler out on the ice in his stroller and push him around—and not a single person stared. It was AMAZING! He was so happy.
We’ve also gone to the Dallas Zoo, Six Flags, museums, a Halloween party, hockey games and even more events with Starlight.
The other Starlight families, also battling childhood illness themselves, make us feel right at home. Connecting with people is my therapy at times. Just when you feel yourself sinking, there is someone inspirational going through a similar situation that can help lift you up.
Thank you, Starlight!
- Maria, Starlight Mom