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4 | January 25, 2018 | The winnetka Current news winnetkacurrent.com Awareness through adversity Winnetka parents become advocates amid children’s health diagnoses Jacqueline Glosniak, Editor Running, jumping, climbing on park equipment — these are all activities expected out of children, especially boys, during the formative years. Often, these are behaviors which, if done too frequently, can be a source of frustration for parents. But for Winnetka resident Alison Joseph, these normal youth habits will be cherished for as long as they can, since in a few short years, two of her children may no longer physically be able to do any of them. As the mother of three sons under 5, Joseph didn’t think much about critical health diagnoses; however, following one freak accident last summer, the course of her family’s life took a turn that Joseph and her husband, William Small, never imagined would happen. Back in July, the Smalls’ middle son, Hunter — a seemingly happy and healthy 3-year-old — went into cardiac arrest after he became caught in his bunk bed between the ladder and the mattress. Luckily, Hunter’s life was saved following CPR and a hospital stay. Elevated liver enzymes on Hunter’s hospital tests were believed at first to be caused from the trauma, so the family was not very concerned about much else other than ensuring such an accident would never happen again. But by November, when Hunter’s liver enzymes still had not normalized, the family’s pediatrician recommended they see a liver specialist. The specialist suspected Hunter may have a form of muscular dystrophy. Following the results from further lab tests, the Smalls received heartbreaking news: Their son had Duchenne muscular dystrophy, one of the nine types of muscular dystrophy and a genetic disorder in which progressive muscle degeneration and weakness are brought on by an - The Golf Bra - buttery, seamless, no padding Plaza Del Lago | Wilmette | C-Lace.com | 847-256-8077 Ways to help What: Donate to Parent Project Muscular Dystrophy How: Visit bit.ly/2BdKfwa to contribute to the Smalls’ Shamrock Shuffle team For more info: Email Alison Joseph at alison.joseph@rosalindfranklin.edu Hunter Small (left), 3, of Winnetka, with his brothers Noah (center), 1, and Carter, 4. Hunter and Noah were diagnosed late last year with Duchenne muscular dystrophy, a genetic disease which will affect the use of their muscles as they age. PHOTO SUBMITTED absence of dystrophin, a protein which is key to keeping muscle cells intact. The disease primarily affects boys, and early symptoms include difficulty getting up from the ground, enlarged calf muscles and having trouble keeping up with normal activities. Because the disease carries an X chromosome recessive gene passed down from mothers, the family decided to have their two other sons tested as well. While 4-year-old Carter does not have the disease, 1-year-old Noah tested positive. “The diagnosis was a complete shock,” Joseph said. “This was nowhere on our radar.” Sooner or later, the family would have learned of their sons’ fates. While signs of the disease may show as early as age 3, children are not typically diagnosed until around age 5. “It was quite incidental and we probably got this diagnosis a year or two years before we would have had any sort of signs and symptoms because right now, [Hunter] sort of doesn’t have anything,” Joseph said. However, in light of the diagnoses, the family is not letting the disease damper its spirits. Instead, this March, they will be participating in Chicago’s Bank of America Shamrock Shuffle 8K race March 25, with proceeds raised from friends and family going toward Parent Project Muscular Dystrophy, an advocacy group dedicated to helping fund research to find a cure for Duchenne muscular dystrophy. “It’s so crazy — Duchenne affects 1 in 5,000 boys, and for it being something that’s not that infrequent of a thing, there’s just not that much that’s known about it for it affecting so many children,” Joseph said. “So, we just wanted to bring about awareness and also help to raise money because the money is directly going to help fund research for Duchenne.” So far, “Team Small Brothers” has 20 total people on the team, and at press time, raised $24,245. Joseph said many Winnetkans have been supportive and helped fundraise, including families at Sacred Heart School, where Hunter and Carter attend preschool. As for day-to-day life, Joseph said right now, neither Hunter nor Noah are showing many symptoms. She said Hunter has already begun physical therapy and is taking swimming lessons — two things she said will help him maintain some strength and mobility. In the near future, both children will begin steroid treatment to prolong their ability to be mobile and maintain cardiac function. In their teenage years, Joseph said most likely, both sons will be wheelchairbound. For now, Joseph said the family’s focus besides keeping her sons as healthy as possible is to continue bringing about awareness of the disease and advocate for continued research. “I think that right now, there’s so much hope to finding a cure and they’re so close, and if there’s just more money that can be given to this organization, I really believe that it can save the lives of all these boys that are affected,” she said. Additionally, the family has also decided to start their own foundation, The Small Heroes Foundation, as another outlet for raising money to fund research and clinical trials for Duchenne muscular dystrophy.
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