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Sasha was born in 1979, being a single parent and relatively young we essentially grew up together. She had some delay in physical development, specifically difficulty holding her head up while crawling and she didn't walk until she was about 18 months old. When she was three, it was determined she should have a brace on one leg to promote flexibility; ulitimately she had to have a operation on both ankles to release the tendons causing contractures. Back then there was a series of tests to determine why she had physical delay, first a blood test, then EEG (a muscle test using mild electric pulses to determine stimulation levels of the muscles) and lastly a muscle biopsy which produced the diagnosis of Centronuclear Myopathy. Sasha was an incredibly smart little girl and I fought many a battle with the school systems to ensure she was placed in the most 'normal' settings to allow her to be a 'regular kid'. Because she didn't have a great deal of stamina and endurance to walk distances during school, I got her a tricycle and this allowed her to get from room to room fast and easily as well as maintaining and promoting her physical activity. She absolutely hated the idea of a wheelchair, and I put it off as long as possible; when she tired I'd scoop her up and carry her--I pretty much had arms like Popeye's. Around the age of about 8, I noticed her gait started to look uneven and she was sort of 'waddling' a bit. We went to her GP,as well as a neurologist and they both said they didn't notice any curvature; finally a few months later I heard of an orthopeadic surgeon in Albany (NY) and he diagnosed her in a heartbeat with scoliosis. To make a long story short, the scoliosis was in constant combat with the muscle disease and Sasha finally ended up in a wheelchair around the age of 9. She received both Physical Therapy and Occupational Therapy within the school setting; because she was removed from classes to attend her therapies it always made her feel like she was behind. I bought her a tape recorder so she could listen to the class instructions while she was out and when she was in 5th grade, a computer to lessen the fatigue she would get from trying to write up homework, reports, etc. Just about every year, I would go before the school board(s) to try to squash their fears that Sasha should be treated like a 'glass child'. Sash proved her educational abilities by constantly surprising them with her intelligence and completing homework no matter what. She was an avid reader, I guess you can rationalize that because her physical abilities were limited she excelled in other areas, but so what? She wasn't one to give in lightly.She even came in second place for the New York State Olympics of the Visual Arts for a Marketing idea! Although she had a back brace, the scoliosis gained ground and she had a subcataneous rod implanted right around the age of 9 and a half. In hindsight, this physical decline happened extremely quickly; scoliosis is an invisible enemy that you try to take a swing at--and miss. I took her swimming when possible, extra care needed to be taken so she wouldn't get a cold. She was eleven, almost twelve and facing another operation on her back when she caught what I thought was a cold and died in her sleep. Her respiratory system had been so compromised by the scoliosis that the result of her death was pneumonia. That old saying, I wish I knew then what I know now is so true; between gaining a degree as well as working at the Center for the Disabled in Albany, NY, there are some very useful alternatives to traditional therapy that kids may enjoy. Hydrotherapy and therapeutic horseback riding witness wonderful results as well as providing an outlet that can inspire kids confidence levels. If I can help anyone with some info, please give me a call @ (518) 437-5576. What Pam & Gary are doing is great, I wish I had had the resources and even just the emotional support to actually share knowledge and experiences with other parents. I see parents struggling at work all the time, not just to try to understand and deal with their children's disabilities, but often they may not know what questions to even ask yet; what may be around the corner to expect with a particular disease. It seems that physicians as great as they are, often give out piecemeal information; this support resource group actually shares insight and real life. I miss Sasha still so terribly much but time has brought the comfort that the pain of loss is numbed but my memories will always be intact. Ceile Furlong |
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