An incredible update on Harlow’s journey 💚 Three-year-old Harlow was diagnosed with the rare and terminal neurodegenerative disease TUBB4A leukodystrophy — a condition affecting just 200 children worldwide. An FDA-approved clinical trial gave her a lifeline: a personalized treatment developed by the Southern California-based @nloremfoundation After months of fundraising, a cross-country move, and unwavering community support, Harlow began treatment back in October. Now, after three doses, her f

Life with Leukodystrophy | Mata team tambay

The FDA approved the first gene therapy for a rare disease known as metachromatic leukodystrophy (MLD). The treatment, priced at $4.25 million, offers hope but comes with a hefty cost. For one Phoenix family, the news was bittersweet. Kendra Riley is a mother of three girls, two of whom — Olivia and Keera — were diagnosed with MLD. Riley joins "NewsNation Prime" to share details on her daughter's treatment. | NewsNation