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Hope Amidst Hardship
The Riley family's fight against metachromatic leukodystrophy. By Naya Seth Photos courtesy of the Riley family
Kendra Riley, Keira's mother, took her experiences to advocate for change. She pushed for the Right To Try 2.0. hree-year-old Keira Riley The original law allowed eligible and her family have been patients to request access to on the rollercoaster of their medications not yet approved lives since her diagnosis with by the FDA, but it excluded metachromatic leukodystrophy the treatment Keira needed, (MLD), and in a race against considering it an individualized time and financial constraints to treatment. Kendra, with support save her. from the Goldwater Institute, successfully lobbied for an In 2020, during the pandemic, amendment. Governor Ducey Keira, then about 5 months signed the new law, expanding old, witnessed a dramatic access to include individualized change in her family. Her treatments not yet FDA older sister Olivia, 2 years old approved. Kendra is also at the time, began losing her working to get MLD added to ability to talk and walk. Olivia's the national newborn screening mother noticed irregular eye panel. movements, as if her irises were Three years post-treatment, vibrating. After undergoing an MRI, Olivia was diagnosed with Keira's health has improved. Annual checkups in Italy have MLD. Learning that they both shown such positive results that carried a recessive gene for the doctors now recommend MLD, Keira's parents had their biennial visits. Keira is a vibrant, other daughters tested. While Eva, the eldest at 5, carried the healthy child, advanced for her age. She adores pink and teal, gene without being affected, relishes mac 'n cheese, and Keira, unfortunately, tested enjoys gymnastics. Her love for positive for MLD. singing, dancing, and wearing Acting swiftly was crucial for fancy dresses brings joy to her Keira's survival. As she was family. Seeing her thrive, they still asymptomatic, she was feel blessed, almost as if MLD eligible for gene therapy, a never touched their lives. treatment available exclusively in Milan, Italy. The family faced To donate to Keira’s treatments, visit gofundme.com/f/helpthe task of moving to Italy for five to six months and covering save-keiras-life-from-mld. the treatment costs, totaling Naya Seth, around $500,000. To support 13 years old, this, a GoFundMe campaign loves to read was created, and the Armer and write. She Foundation for Kids offered is a member of financial assistance. Despite National Junior these challenges, the family Honor Society embraced the positives. and National Frequent trips to Amsterdam Charity for Olivia's treatment, while they League and were in Italy, exposed them to enjoys participating in various philanthropy activities. new cultures and lifestyles.
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EPIC KIDS | DECEMBER 2023 | 13
