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    Posted January 24, 2014 by
    East Lansing, Michigan
    This iReport is part of an assignment:
    Living with a rare disease?

    What happens when a child dies from a rare disease

    I'm writing today on behalf of my friend, Abigail Waller, who lost her son Charlie to DIPG at 5 years old. DIPG or Diffuse Intrinsic Pontine Glioma, the worst of all possible brain stem tumors, is rare with about 125 cases reported in the USA in a year. It affects the young, mostly between ages 5 and 10. Charlie was diagnosed at age 2.
    I think much attention is given to the living, but Abby would love to share her family's story about what happens when a rare disease kills a child. Living with it is one story, dying from it is another. Charlie has two stories, his life, and the legacy he's leaving behind.
    Please check out to see his story (updates are provided by his dad John as blog posts) and also that highlights foundation work they are doing moving forward. The Art for Charlie Foundation is a 501(c)3 charity established in 2012 to help children with life limiting illness and their families. For the children, they work to ensure that hospice care is available, to ensure the best quality of life for the child. For their families, the mothers, fathers and siblings, who suffer bereavement, they offer help and support through grants, group therapy and counseling.
    Please let me know how I can put you in touch with Abby.
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