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