AHWATUKEE, Ariz. - Life for the Rileys has been nothing short of challenging these past two years. Having to travel to Italy to get a lifesaving treatment for their daughter, but they're hoping to soon get help here at home.
"Everything was upside down in the world, and then we had this personal situation happening," said Kendra Riley, who has three daughters. Two of them, Olivia and Keira, have a rare genetic disease called metachromatic leukodystrophy.
"It affects the mileage (blank) of the brain, it affects the nerves so really quickly our daughter Olivia lost her ability to walk, talk, she can no longer eat on her own and the average life span is age 6 ."
Sadly, there is no cure for people who are symptomatic like Olivia, but 2-year-old Keira, who was a newborn at the time she was diagnosed, there was a chance as she was not showing symptoms. But the only way to get specialized treatment to save her life was to move the family to Milan, Italy for six months during the COVID-19 pandemic.
"There were appointments like the process of Leukapheresis where you pull out the stem cells in order to take them to the lab fix them essentially and put them back into her body but after Leukapheresis she has to go to chemo for 4 to 5 days after the chemo they put the renewed stem cells back in her body just through an IV."
Keira received an individualized treatment that FDA regulations block access to in the states. Kendra and others are trying to change that and through their efforts, Arizona is now considering the Right to Try for Individualized Treatments.
"These are tailored made for the individual. Individualized treatments in the states has all but stifled, it is difficult to get these yet in other countries they are really popular. We see that this truly is the next wave of medicine," said Jenna Bentley, Director of Government Affairs for the Goldwater Institute.
If the new piece of legislation becomes law in Arizona, no family will have to go through what the Rileys have endured. The bill is currently awaiting a floor vote in the Arizona House.
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