Phoenix family asking for help affording treatment for daughter with rare brain disease
PHOENIX - A valley family is trying to save their daughter after she was diagnosed with a rare brain disease.
The treatment to save their youngest daughter's life is in Italy, and it costs nearly $500,000.
"[Olivia] was diagnosed with Metachromatic Leukodystrophy (MLD), basically a very progressive, degenerative, genetic disease that could only give us a couple more years left with her."
Dave and Kendra Riley's daughter Olivia was diagnosed with MLD, a rare genetic brain disease after the two-year-old lost her ability to walk, talk, and experience pain on a daily basis.
After the diagnosis, they decided to get their other daughters tested as well.
"Immediately when we found out, we had to get our other daughters tested and unfortunately, found out that our youngest daughter, Keira, who is five months old, has the same disease. Thankfully she's not showing any symptoms yet so there is a chance for her to be saved from this horrible disease," Riley said.
For that chance, they have to travel across the Atlantic Ocean to Milan, Italy for treatment.
The chance to give their daughter a normal life will cost them.
The Rileys held a yard sale on Sunday, July 12 but that won't be enough. They put together a GoFundMe page to help as well.
"The gene therapy trial in Italy is closed, the clinical trial is closed, but thankfully they are offering us the treatment, but we have to pay out of pocket. Between the treatment itself, the lodging, and the travel, we have to raise hundreds of thousands of dollars to get there," Riley said.