11th Annual Golf Tournament Fundraiser
Sunday, October 18, 2020 - Timacuan Golf Club, Lake Mary, Florida
Matthew Walker is the son of Jonathan & Cynthia Walker of Heathrow, Florida. Matthew will be 15 years old in September. He is one of three children, Morgan 17 and Adam 12 years old. On behalf of the Walker Family it is their hopes and wishes that you, your family, loved ones and friends are well and doing all you can to avoid the Coronavirus Pandemic.
Matthew is one of approximately 40 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 the brain are disorganized causing the communication pathways of the brain to be challenged, therefore causing significant impairment in his physical and cognitive abilities. Secondary to Matthew’s neurological disorder in recent years, he was diagnosed with a rare form of epilepsy known as Lennox Gastaut Syndrome causing life threatening seizures. Matthew is unable to walk or talk and is dependent upon his family and professionals to complete his activities of daily living. The ketogenic diet and medications are administered to Matthew through a feeding tube continuously on a daily basis for the control of several different types of seizures. Matthew continues to overcome many challenges on a daily basis. The corpus callosotomy brain surgery Matthew underwent three years ago continues to show successful results. Although, Matthew has been averaging 90 seizures per month this is significantly below the 60 seizures per day Matthew was experiencing prior to surgery.
Over the past year Matthew has shown great progress with the help of Epidiolex/cannabidiol to control seizure activity. On average he is still suffering from three to five seizures per day. As Matthew continues to grow into a young man hormonal issues may be resulting in a seizure aura that could potentially be causing cluster type seizures. Overcoming gastroenterology problems caused by continuous tube feeding have been a challenge and potentially causing pain and eventually seizure. The doctors have adjusted his medication regimen and it seems to be much better. Unfortunately, Matthew has not been receiving Physical Therapy over the many months due to the Coronavirus. Matthew experiences outbursts of being upset on a daily basis which hinders the ability to make much progress on the Tobii Dynovaox technology he is trying to master to help him communicate. However, Matthew’s will to walk and communicate remain strong. Matthew will be entering the 8th grade at Millennium Middle School in the Exceptional Student Support Services of Seminole County, Florida. Due to Matthew’s medical acuity, Seminole County School Hospital Homebound Services will continue to be available for home visits two days per week one hour per visit. Because of the Coronavirus this will be conducted via Zoom web-based video conferencing from his teacher. In addition, Matthew hopes to return to physical and other therapies in the very near future to help him reach his ultimate potential.
The Annual Golf Tournament Fundraiser was created to assist financially for the care, special facilities and medical attention that Matthew’s ongoing disabilities require. Despite the Coronavirus Pandemic the tournament fundraiser will happen, however, a few changes have been made to this year’s event to insure the safety of all in attendance. Out of concern and respect of the event contributors towards the auction, raffle and dinner activities a decision was made to forgo this portion of the Fundraising event with hopes to resume next year. A boxed lunch will be provided for all attending golfers. In addition, golfers will be issued individual golf carts to help comply with CDC guidelines for social distancing. During the event masks will be required when six feet of distance from others cannot be avoided.
Last year's Golf Tournament Fundraiser was a great success! Special thanks to the following and the countless other organizations, families and friends that have given their hearts out to Matthew:
Raymond James Financial Services, Arnold Palmer Invitational by MasterCard, Walk on Water Boutique, Fast Signs Sanford FL, Lake Mary Pediatric Dentistry, Russie Weidl - Watson Realty, Mom's Club of Heathrow, James Ho, DMD PA, Intercontinental Hotels, Miami FL, Trademark Press Solutions, Pierce Jewelers, R.A.R.E Project, Timacuan Golf Club, Erica Karlinsky PhD, Heathrow Country Club, Zero Latitude Custom Home Design, Kids Docs/Florida Children's Physicians & Surgeons Inc., Steve Strassman Insurance/Allstate, Debby Taboh Photography, Park Jewelers, Heathrow Country Club, Orlando Magic, AmStar Cinemas, Vineyard Wine Company, Trianon Hotel Naples, Florida, Jackson Family Fine Wines, Rizzieri Salon, Friendly Confines Restaurant, Papa Joe's Pizza, Duffy's Sports Grill, Giovanni's Italian Restaurant, Miguel & Brittany de Arcos, Dr. Robert Hoover / Foot & Ankel Associates of Florida, sophie & trey, Digital Check Corp, Florida Pediatric Associates / Eye Physicians of Central Florida, Sherwin Williams, H&F Construction, Legacy Club at Alaqua Lakes, Seminole Harley-Davidson, Wiewiora & Dunn Orthodontics, Cato Environmental Services, Liam Fitzpatrick's, Dexters Restaurant, Spice World, Residence Inn by Marriott Lake Mary, Another Broken Egg Cafe, Tomasino's Pizzeria, Jeff Jones Jr. Golf Instruction, Central Florida Therapy, Center for Health, Learning & Achievement, Transitions Physical Therapy, Cara Grebler / Premier Realty Partners, Pristine Nails & Spa, Kennedy's All-American Barber, Nothing bundt Cakes, Collaborative Wealth, Orlando Solar Bears
For more details on Matthew's Golf Tournament Fundraiser please click on the Golf Tournament Registration Form button.
For more information please contact:
Miracle for Matthew Fundraiser