Raising Awareness

Like any teenage girl, Alli Williams, 17, has a wish. While being a bit taller is on her list, she is truly dedicated to one singular goal — raising awareness about MPS.

Diagnosed with MPS I at four months old, Alli, of Owensboro, Kentucky, received a bone marrow transplant that has allowed her to live her life to the fullest — something she wants for others with MPS.

“What I want more than anything is to raise awareness about MPS and encourage funding for research for a cure,” she said. “Funding alli1can help the kids and their families in many ways for the treatment or research they need to get better. Without treatment, they will die and not have a chance at life like I did.”

Wish Upon a Star, an Evansville, Ind.-based nonprofit organization, grants once-in-a-lifetime wishes to children ages 3-18 with life threatening diseases. The organization reached out to Alli about granting her a wish and was surprised to hear that her wish was to raise awareness about MPS.

Executive Director Susan Washburn said most kids wish for trips to Disney World or to meet famous athletes, but Alli’s wish was unique, focusing on helping others rather than herself.

To fulfill Alli’s wish, Washburn has helped Alli talk with local and regional media organizations about MPS, participate in the Evansville Streets Alive parade and sing during the seventh inning stretch of the Evansville Otters baseball game.

“MPS kids need a second chance,” she said. “We are fighting for our lives and also have many surgeries due to our syndromes. My greatest wish is raising awareness for MPS.”

 

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