Every now and then everyone needs a miracle. Some people themselves are a miracle. Many of you who are reading this column have probably already helped someone with a miracle this summer. Maybe you’ve even been the beneficiary of some small miracle and know the relief of having some worry taken from you. Whatever the case may be, there are others out there waiting for a miracle. Matthew Sloan Walker is one of those people.
Matthew will be five-years-old in September. He has a rare disease called Subcortical Band Heterotopia or Double Cortex Syndrome (DCX). According to the Genetic and Rare Disease Information Center (GARD) of the National Institute of Health’s Office of Rare Disease Research, “Double cortex syndrome, also known as subcortical band heterotopia, is a congenital brain abnormality primarily affecting females that results from aberrant migration of neurons during development of the cortex.” Although most often found in females, there are a few, approximately 35, who are males.
The effect on the individual varies — some affected with the genetic disease may be normal, some may experience mild epilepsy, some may experience extreme intellectual disability and extreme epilepsy. Matthew, who requires physical and speech therapies, functions physically at the 9-12-month-old level, and his motor skills are lagging behind.
Matthew resides in Florida with his parents Jonathan and Cynthia Walker and his two siblings. There he receives funding from the United Cerebral Palsy of Central Florida during the school year. When school is out in the summer, the funding stops and because his disease is so rare, the insurance companies won’t pay for the therapy. So the family needs a small miracle to help Matthew to get the proper therapy during the summer months.
Last year I was introduced to Matthew’s plight by his uncle Michael Hadzick. At that time, Michael was a novice at fundraising, but he was determined that Matthew was going to get the help he needed. Though a native of Freeland, Michael works here in the “Valley with a Heart” and found out just how big those hearts are — especially those in the motorcycle riding community. With the help of not one but two motorcycle clubs, Wyoming Valley Motorcycle Club and Freeland American Legion Riders Post 473, Chacko’s Bowling Alley, and the Parish Center of Immaculate Conception in Freeland, Michael earned his stripes as a fundraiser.
Because of those efforts and the generosity of the motorcycle community and the greater community in which they live and work, Matthew’s parents were able to purchase a new specially adapted walker. The walker needs this adaptation as Matthew’s motor skills do not permit him to use a normal walker, and his small frame must be supported to use the walker. Matthew was also able to continue with therapy during the summer, which was no small miracle in today’s society where health care is out of reach for much of the population, and rare diseases are often not funded for at all.
Not only has Michael been instrumental in his nephew’s life, he has also touched the lives of other children with rare diseases. He has taken time out of his busy life to help other families of children with rare diseases to learn how to set up motorcycle runs and contributes to the children’s rare disease blog. He is also instrumental in the Global Campaign for National Rare Disease Day. Among his many other talents, Michael is also a talented creative artist and developed the logo for this organization. A ribbon in the shape of pair of blue jeans (genes, get it?).
This year, Michael hopes to repeat the success of last year and counts once again on the generosity of the biker community. He tells me that one biker told him that more money is donated to the biking community’s various charity efforts than is given to the American Red Cross. Every weekend is living proof to that as you see bikers riding for one cause or another over the riding months.
If you are interested in helping Matthew and his family, join us in a ride for a miracle Sunday, Aug. 8. Registration opens at 9 a.m., and the ride departs at noon from the Dragon’s Lair (1341 Route 315, Plains Twp.). This is a parade ride and will end up at the Screwballs Bar and Grille (1474 Sans Souci Parkway, Hanover Twp.). This ride is co-sponsored by the Hadzick-Walker families and the Scrap Iron Motorcycle Club.
Like most rides, there will be food, entertainment and the traditional 50/50 and basket raffles at the end of the ride. So come on down join us and let’s ride for a miracle for Matthew.
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