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Because it is so rare, little research has been done on developing a deeper understanding of it, and even less on developing treatments. Continue Reading. The best thing about this show is you just never know which turn it's going to take and I think the same can be said for Meadow's character. I did't know if I had what it took. All rights reserved. A hard reality of advocating for a rare disease is the solitude you feel when searching. More In Tv.

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She developed muscle weakness, poor coordination and balance problems.

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They eventually started happening during the day. Chris runs Rare Science a non-profit organization that focuses on children with rare diseases by partnering with patient family communities and foundations. By creating a profile, you can receive news, resources and updates related to this disease as well as many other benefits. Through all of this, Steve and Gay have worked tirelessly to support her.

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Steve thinks she called.

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