The fifth annual fundraiser held at the Timacuan Golf Club in Lake Mary Florida hopes to raise funds for Matthew Walker, born with a Subcortical Band Heterotopia. The event will take place on October 19, 2014.
Matthew Walker is the son of Jonathan & Cynthia Walker of Heathrow, Florida. He is one of three children, Morgan who is 10 years old & Adam 6 years old. Matthew is an 8 year old who is 1 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, 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. Within the past year Matthew has been diagnosed with Lennox Gastaut Syndrome which is a rare form of epilepsy. This was brought on by his ongoing medical condition. Frequently, Matthew will experience clonic tonic type seizures and head dropping events that are currently being controlled by changes to his medication regimen. This past year has been extremely challenging for Matthew! Aside from his ongoing challenges he spent three weeks at Arnold Palmer Hospital for Children overcoming aspiration pneumonia due to reflux and was successfully cured by the Nissen surgical procedure and is now getting the nourishment, hydration and medicines through a feeding tube. Matthew is still overcoming challenges but has been seizure free for nearly two months! 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 have the facility and professionals trained in speech, occupational and physical therapies to help Matthew reach his potential. Matthew has been limited to attending school this past year due to his health conditions. His family has set up a Special Needs Trust for the future needs of their son. The need for specialized food, equipment, therapies and medication is ongoing. Matthew will continue to need the support of his family throughout his life.