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Community

Local Family Fundraises for a Chance to Save Their Daughter’s Life

Five hundred thousand dollars and five months in most words and experiences some form of pain from Italy. That’s the Riley family’s only hope for sav- moderate to severe on a daily basis,” says Kendra. “She ing their 5-month-old daughter Keira, who along still has a lot of smiles and her big sister Eva and baby with her 2-year-old sister Olivia, suffers from a form sister Keira always make her light up.” of Metachromatic Leukodystrophy (MLD) so rare that they don’t even search for the mutation in today’s This summer, the Rileys learned Keira also has both genetic testing. mutated copies of the gene and has been diagnosed The family needs to raise money for treatment. Tax deductible donations may be made at armerfoun- The Rileys turned to CureMLD.com and The MLD dation.org/keira-and-olivia. The family also has a Foundation, and learned of a cutting-edge MLD gene GoFundMe page at gofundme.com/f/help-save-keiras- therapy treatment only available in Milan, Italy, and it life-from-mld. may not be covered by health insurance. Since beginMLD is an extremely rare, fatal brain disease that treated 29 patients from around the world, 26 of which destroys the protective fatty layer (myelin sheath) sur- are still alive. rounding the nerves in the central nervous system. It aggressively takes away motor function and other abili- Currently asymptomatic, Keira is eligible for the theraties when symptoms show early in life. Most children py but not as part of the clinical trial, which means the are not expected to live past 4 to 6 years old. Riley family will have to pay for her treatment out of Olivia’s siblings were immediately tested while Olivia ment for treatment, lodging, travel and living expenses began the only ongoing clinical trial for MLD patients. during treatment is estimated at $500,000. The treatment is not curative and cannot reverse damwith MLD. ning the treatment in 2010, the Institute in Italy has pocket if it is not approved by insurance. The investage already done, but seeks to slow the rapid progres- “We only have one hope left; $500,000 sounds impossion of the disease while protecting and preserving sible. It’s overwhelming, but if 100,000 people who quality of life. hear our story are compelled to donate just $5 each – we’ll have the opportunity to save our daughter Keira’s “Olivia has lost her vocabulary, cannot pronounce life,” Kendra says.

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