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Our 5-year-old son, Jake, was born healthy on September 24, 2004. But two years later, Jake needed speech and language therapy which he began at the just-opened Wolfson Children's Drew Bradbury Rehabilitation Center. During Jake's first visit an artist was painting an eye-catching, fun scene of downtown Jacksonville in the waiting area. The artwork is warm and the center feels more like a school than a clinic. We soon developed a great relationship with Jake's speech language pathologist. He loved going to see "Miss Kerry" and would sprint through the building on the way there.
Jake made steady progress throughout 2007. He was a happy and energetic little toddler. But after a couple of accidents in late 2007 and two trips to Wolfson, three-year-old Jake was diagnosed with epilepsy. During one of Jake's hospital stays the attending pediatrician was Dr. Fred Guyer. Dr. Guyer was extremely personable and spoke to Jake in a funny "Donald Duck voice." We ran into Dr. Guyer six weeks later when Jake was back at the hospital for an MRI. He immediately remembered Jake and seemed genuinely interested in his progress.
Throughout 2008 Jake's neurologist, Dr. Harry Abram, worked diligently to control Jake's seizures with various medications. Unfortunately, medications were not successful. Jake also failed to progress developmentally, even to losing skills he once had acquired.
In the spring of 2009 Jake was back at Wolfson after an unusual siege of seizure activity. As his development deteriorated even more rapidly, Jake lost his ability to walk or talk. While we were there we learned what an incredible facility Wolfson is and how very fortunate we are to have this top rate hospital so close by. We experienced compassionate experts trying to help us.
Jake has undergone additional therapy over the months. Unfortunately, on Friday, October 23, 2009 Jake was diagnosed with a very rare and fatal autosomal recessive neurodegenerative disorder called Late Infantile Batten Disease. The typical early signs are loss of muscle coordination and seizures along with progressive mental deterioration. The form that Jake has been diagnosed with progresses rapidly and ends in death between ages 8 and 12. Currently there is no widely accepted treatment that can cure, slow down, or halt the symptoms of Batten Disease. It is our faith in God and our love for Jake that keeps us strong as we continue this long journey.
Thank you, Wolfson, for bringing us this far and for your continued support.
Dean and Jennifer Medley
Jake’s parents |
