In a land far away and filled with sunshine, there is a small boy who lives with a very rare neurological brain disorder called subcortical band heterotopia. If you’ve never heard of this disorder, you aren’t alone. Matthew Sloan Walker is one of only 35 males diagnosed with this disorder in the whole world.
It is so rare that “Both a pediatrician from Johns Hopkins Hospital in Baltimore and a world-renowned pediatric neurologist in Chicago consult on Matthew’s condition as they are the only known experts related to Matthew’s condition,” says Matthew’s Web site, miracle4matthew.com/index.htm. It is also so rare that insurance companies don’t recognize it. And you know what that means for the family in these tough economic times. By now you are asking yourself why Scooter Girl would be writing a column about a little boy we don’t know who lives in Florida.
The reason is on June 7 there will be a motorcycle run sponsored by the Wyoming Valley Motorcycle Club to raise money for the much-needed care that Matthew requires. Usually you read about these runs after they are done. But Matthew’s story is one that is so unique that he deserves some ink before the run so that there are as many generous bikers and others that will attend and make this run a huge success. This, by the way, is print ink, not tattooing ink.
I’ve been chatting for weeks now with Matthew’s uncle Mike Hadzick about the run and about Matthew and am quite enamored by the courage that his family and above all others Matthew shows in his determination to talk and walk, something many of us take for granted. One look at the photos of Matthew’s smile, and you’ll melt as well.
Mike wants everyone to know that they are invited to this event. I asked Mike how he came to think of a ride here in Pennsylvania for his nephew and he told me, “He has a friend who rides [who] suggested that I consider a bike run for Matthew and that I get in touch with Vince Sweeney. I contacted Vince Sweeney, who was kind enough to get me in contact with Guy Izzo from the Wyoming Valley Motorcycle Club. When I spoke to Guy about Matthew and a bike run, Guy and the club immediately welcomed the opportunity to sponsor the event.” Who says bikers aren’t a soft touch?
Some facts about the run itself: It starts at Dragon’s Lair (1341 Route 315, Plains) and ends at Gabriella’s (295 Parsonage St., Pittston). The cost is $15 to participate, registration is from 11 a.m.-1 p.m., and the ride will leave no later than 1:20 pm. And most important: free food, free band and a cash bar! To purchase your tickets or for more information, contact Mike at 215.837.1758 or Matthew’s maternal grandparents Alexandra and Michael Hadzick at 570.636.2454. You can also register at the Dragon’s Lair at the start of the run. Motorcars as well as motorcycles are welcome. So come one, come all!
Matthew is three years old, and the disorder, according to his Web site “is one in which the white and gray 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 cannot walk or speak and is totally dependent on his family and the professional therapists that work with him. According to his uncle, this is not so bad during the school year, as the Florida’s United Cerebral Palsy organization funds this for Matthew, but the summer months when children are out of school is a different story — the funding for this care is totally in the hands of the family. A sample of this from the Web site: “Matthew requires three types of therapies two to three times a week. One 30-minute therapy session costs $250.” That cost adds up over the summer.
While many of us are saving and planning our summer vacations, or as Candice Kelly said the other evening, “staycations,” Matthew’s parents are trying to find the funds to keep Matthew in the therapy that he needs. Meanwhile, Matthew’s smiles encourage his family, his friends and those that know him. Check out his Web site, created by Dawn Karzenoski, for more information about Matthew and more pictures. There is also a FOX Orlando news story. This kid is news, he is special and he needs your help. So I hope to see you at the Dragon’s Lair on June 7, for Matthew.
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