4th Annual Golf Tournament for Matthew with Subcortical Band Heterotopia
August 30, 2013
The fourth annual fundraiser for Mathew Walker will be held on Saturday, October 19th, 2013 in Lake Mary, Florida at the Timacuan Gold Club. Global Genes has been honored to participate in this fundraiser for the past few years.
Matthew Walker is the son of Jonathan and Cynthia Walker of Heathrow, Florida. He is one of three children; Morgan, 9 years old, and Adam, 5 years old, are his siblings. Seven years old, Matthew is one of approximately 35 known males in the world born with a rare neuronal migration disorder of the brain called subcortical band heterotopia.
This disorder is one in which the white and grey matter of Matthew’s brain are disorganized, causing the communication pathways of the brain to be challenged and therefore causing significant impairment in his physical and cognitive abilities. Matthew is unable to walk or speak and is dependent upon his family and professionals to complete his daily activities and living skills. Under the care of Dr. Ronald Davis of Pediatric Neurology, P.A. & Pediatric Epilepsy Center of Central Florida and Dr. Miles Landis of Lake Mary Pediatrics, Matthew has overcome many challenges this past year. Many thanks for the ongoing support of these professionals and staff. Matthew has recently been diagnosed with Lennox-Gastaut syndrome, a form of epilepsy. This was brought on by his ongoing medical condition.
Frequently, Matthew will experience multiple head dropping events that are currently being controlled by changes to his medication regimen. Matthew’s condition and current prognosis is that he will live well into his adult years. He is currently enrolled at Wicklow Elementary of Sanford Florida who has the facility and professionals trained in speech, occupational and physical therapies to help Matthew reach his potential. Many thanks to our friends at Wicklow and Seminole County Schools! Through his therapy sessions, he is making great strides but still Matthew requires assistance with feeding, toileting and bathing– which require special facilities for simple tasks that are often taken for granted. A Special Needs Trust has been established for Matthew’s on-going and future therapies, medication and specialized equipment he requires.
If you’d like to attend the fundraiser, you can download the registration form here.
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