As many of you already know, our son Bodie suffers from Tuberous Sclerosis Complex (TSC). He was diagnosed just before turning 4 months old after we noticed some strange movements in his right arm and leg. We spent a few nights in the hospital having various tests done, including an EEG, MRI, EKG, and ultrasound. The results confirmed that he was having focal seizures due to numerous non-malignant tumors in his brain caused by TSC. Since then, we have also discovered that he has a few rhabdomyomas in his heart and a hamartoma in his right eye, but are happy to report that those seem to be causing him no issues currently.
Bodie's seizures were controlled by various medications and supplements for about 7 months, but unfortunately the seizures returned in April. We are currently trying to come up with the right combination of medications. He will also be admitted to the hospital on May 13th to start the ketogenic diet, which has proven effective for many kids with epilepsy. When kids with TSC lose seizure control, they often fall behind developmentally. Bodie is already getting four hours of therapy each week through the state's Early Intervention Program, including physical therapy, occupational therapy, developmental therapy and speech therapy. We are so happy to report that he has been progressing wonderfully! He has even started crawling and babbling quite a bit! Our main priority right now is seizure control, and we are so grateful for all of the support from family and friends, our team of doctors at both Lurie Children's Hospital and Cincinnati Children's Hospital, and all of Bodie's therapists.
We love Bodie more than words can describe, and every day we pray for a cure so that he no longer has to endure all the doctor visits, tests and therapies. That's why our team is participating in Step Forward to Cure TSC. We choose to fight for the 1 in 6,000 people born with TSC every day, 50,000 in the U.S., over 1 million worldwide. TSC is more common than Lou Gehrig's disease and Cystic Fibrosis. And there is no cure. Yet!
Ours is a story of determination. Our stunningly small group of parents, through sheer will and passion, have brought this disease to the brink of a breakthrough. We are joined in our fight by aunts and uncles, brothers and sisters, grandparents and friends, co-workers and colleagues. We're asking you to join us in the fight to find a cure! Please help support our family who have refused to give up, refused to take no for an answer, even when faced with the daily challenges of seizures, autism, ADHD, facial disfiguration, anxiety, behavioral problems, and medical complications.
We're making HUGE strides in finding a cure for TSC. Here's what we know now we didn't know a few years ago: TSC is what's called a "linchpin" disease. The genetic pathway involved in TSC is the same pathway affecting more than a dozen major diseases and disorders, including autism, epilepsy, cancer, and obesity. We’ve got a long way to go, but researchers recently initiated a clinical trial to determine if we can actually prevent the development of seizures in babies born with TSC. We're in a race against time and our resources are strained beyond their limits!
We are participating in Step Forward to Cure TSC walk. Please support our fight by joining team "Bodie's Buddies" and helping to break the back of this horrific disorder. You can register to join us or make a donation securely by clicking the donate button on this page.
Many, many thanks and much love!
Kaylan, Dan, Grady and Bodie xoxo