Ahwatukee family with rare gene disease highlights need for expanding ‘Right to Try’

The bill already passed the Senate and through one House committee; the Goldwater Institute said they hope to get a floor read in the next couple weeks.
Published: Mar. 16, 2022 at 8:22 PM MST
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AHWATUKEE, AZ (3TV/CBS 5) -- An Ahwatukee family is pushing for a new bill to pass after going through a traumatic family experience where one of their young daughters will live, but the other will likely die. It’s due to a rare disease that’s sent them across the world for treatment, but if this bill passes, it could benefit many other people dealing with diseases like cancer.

Arizona’s Family first met the Riley family in the summer of 2020, a few months after they got a devastating diagnosis for one of their three young daughters, Olivia.

That diagnosis made it possible to try to save the life of their baby girl, but the only way to do that was to go to Europe. It’s an absolutely impossible situation for any family. “We call Olivia Keira’s guardian angel on earth because without Olivia’s diagnosis, we wouldn’t have found out about Keira in time,” said Kendra Riley.

Kendra and her husband David have three girls - Eva, Olivia, and Keira. In 2020 Olivia was quickly regressing and was diagnosed with an extremely rare version of “metachromatic leukodystrophy” known as MLD, which attacks the brain and nervous system. “Within 90 days of diagnosis, she lost the ability to walk, she lost the ability to talk, she can no longer eat on her own, and she’s enrolled in hospice,” said Kendra.

They found out the disease is genetic, and while their older daughter tested negative for it, their baby Keira returned with the same illness. She hadn’t shown symptoms yet, so she had a chance to be part of a lifesaving gene therapy program, but it was only offered in Italy, and they had no time to wait until she had symptoms.

The community helped them with funds for the trip. “We only had a month to raise hundreds of thousands of dollars to do it,” said Kendra.

The Rileys lived in Italy for five months during the pandemic so Keira could receive the treatment and are supposed to go back every six months for checkups. So far, the treatment seems to be working. “She’s now a normal two-year-old girl living a normal life. She’s climbing, she’s running, she’s riding a scooter, having conversations with us, things Olivia never got the chance to do,” said Kendra.

But some families may not be able to pick up and go to Italy like the Rileys. “Senate Bill 1163 allows patients expedited access to individualized treatments in Arizona in hopes that no family ever has to go through what the Rileys went through,” said Jenna Bentley with the Goldwater Institute.

The Goldwater Institute is pushing for SB1163 to pass. Kendra has been testifying in support at the Capitol that would expand the “right to try” bill and make treatment like what Keira needed available here in Arizona without the lengthy process of going to the FDA for permission. This process can take months that some patients like Keira didn’t have.

“If I can help another parent not see their child die at an early age, I’ll do anything for that,” said Kendra.

The bill already passed the Senate and through one House committee; the Goldwater Institute said they hope to get a floor read in the next couple weeks and get it to the governor’s desk.

Kendra said while Keira is now two and a half and progressing in the best way, Olivia is three and a half, and they have been told she likely will only make it until six years old.