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An Arizona family is pushing for a proposed “Right to Try 2.0” law from the Goldwater Institute after they were forced to raise thousands of dollars and temporarily move to Italy to receive medical treatment for their 2-year-old daughter who has a rare genetic disease.
Life for the Riley family changed in March 2020 when Olivia, their 1-year-old daughter, was diagnosed with Metachromatic Leukodystrophy (MLD), a highly progressive and rare genetic brain disease that impacts an individuals’ ability to walk or talk. Three months later, Keira, Olivia’s younger sister, received the same diagnosis as a newborn.
Keira and Olivia Riley were both diagnosed with Metachromatic Leukodystrophy (MLD), a highly progressive and rare genetic brain disease.
(Goldwater Institute)
“When we first got Olivia and Keira’s diagnosis, honestly, we didn’t know there was an option,” Kendra Riley, Olivia and Keira’s mother, told Fox News Digital.
Assistance was available for Keira, but that treatment was more than 6,000 miles away in Italy, requiring the family to raise money in an effort to make the trip to receive the life-saving gene therapy treatment — a treatment that lacked approval from the U.S. Food and Drug Administration.
“We had to raise hundreds of thousands of dollars in a month’s time, plus get the girl’s passports and visa’s during a pandemic, no less, which is a whole other story,” Riley said. “We looked into Right to Try when we first were exploring options, but unfortunately it didn’t cover what our situation needed, especially because we had so little time on our hands. It was a literal race against time to get Keira this treatment she needed before symptoms started occurring.”
Kendra Riley, Olivia and Keira’s mother, said Olivia’s disease progressed rapidly and within 90 days of symptom onset, she lost the ability to walk or talk.
(Goldwater Institute)
Kendra said Olivia’s disease progressed rapidly,…
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Source : foxnews
