Welcome to Jake Junction

Our son's name is Jake Bower. He was born on Christmas Eve, 2003. He was born 5 weeks premature and spent 9 days in the NeoNatal Intensive Care Unit of the hospital. He came home what we thought was a healthy and happy boy.

After six months we realized Jake was delayed. Since then he has had countless doctor appointments and hospital stays at All Children's Hospital in Saint Petersburg, Florida. He developed Cataracts, which required surgery and has artificial lens implants, the only chance he had for any type of vision. He suffered from a severe case of Infantile Spasms, a form of Epilepsy. After numerous anti-convulsant medications failed to work, we had no choice but to try Vigabatrin, a medication used in Europe since 1996. Vigabatrin is the first anti-convulsant medication that Europeans prescribe for a case this severe. However, since the medication was not FDA Approved, our insurance would not cover the cost, even after appeals.

Dozens of tests ranging from Spinal Taps to Muscle and Nerve Biopsies have been performed. They have concluded our son has Congenital Muscular Dystrophy, Subtype unknown. This is a very rare form of CMD. The Congenital Muscular Dystrophy disorders were only separated into their own categories in 1998. There is much to be learned about these congenital genetic defects.

Congenital Muscular Dystrophy affects the Muscles, Eyes and Brain. Jake has very low muscle mass and tone. He will never have 20/20 vision due to the artificial lens implants. Jake's EEG is abnormal and reflects a susceptability to seizures, requiring continuous use of anti-convulsant medications.

While Jake is developmentally delayed, he continues to progress on his own schedule. Please take a moment to learn more about his progression.