Nancy has struggled for decades, with a rare and degenerative combination of paroxysmal kinesigenic dyskenesia and early-onset generalized dystonia. The disease started in a knee when she was 17 and has now progressed to include everything from her hips down. The extreme rarity of the disease has meant that it took over 18 years to get it diagnosed.
Until recently, she used crutches and braces to walk. She has expressed frustration with people looking at her crutches and saying, “you poor thing”. To Nancy, her “sticks” represent freedom, and she had been seen racing her sons with them on local playgrounds. Her leg brace had the word "WARRIOR" decaled on it in hot pink.
A year ago Nancy found a doctor who was able to put a name to the disease and prescribe a treatment that had amazing results. Within a few days, her bent feet and ankles uncurled and she was able to walk on her own! With her doctor’s permission, she even started learning to roller derby skate, with the new dream of becoming a referee (zebra) one day.
Unfortunately her recovery was short lived, and a few months after starting treatment, the disease came back stronger than ever. Nancy once again struggles daily with the pain and difficulty of walking with her sticks. Her legs now spasm too much to wear braces. She tried Botox injections to relax the muscles, but they were effective for only 3 weeks instead of the 3-5 months hoped for.
Her doctor has said there is nothing more she can do for Nancy, and she is being sent to another facility in Portland with the hope that answers can be found there. The doctor also told her she will need to get a wheelchair. Nancy works full time, so she is not eligible for a wheelchair through social security. She has insurance through her non-profit job, but affording the $1,500 copay might be even more challenging for this tough lady than adjusting to a life in a wheel chair. A charity has lent her a wheelchair for 3 months while she saves up – she’s named it Bumble Bee (the Transformer, not the bug.).
What Nancy’s friends love about her is her constantly positive attitude in the face of what must surely seem like a life prison sentence. She rarely complains and always manages to find a silver lining in every bad situation. Please help us help Nancy get the perfect wheelchair for her new lifestyle so she can remain as fiercly independent as ever. And while we’re at it, Nancy has requested that any additional funds above what she needs for the wheelchair be used towards dystonia research! You got it, Nancy!
- Harry Young
- Tabby Vos
- Bill Murray
- Nam Tran
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