Why we need Donations

Willow is fine now, but unless she gets a life saving treatment she will suffer terribly, her body will break down and she will lose most of her functioning including eye sight, muscle use and brain use, resulting in death at a young age. Willow has excellent health insurance through Tricare/Humana. If there was a drug, Tricare would pay for it. The problem is there is not a treatment available. Because this disease is ultra rare – only 21 known patients in the world – it is not profitable for the pharmaceutical companies to fund. We have to fund it ourselves. Our goal is to raise $1,000,000. Together we can beat this.

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