Mom Told Daughter Would Be ‘Locked in Her Body’—She Refused To Give Up
Summary
A four-year-old girl named Harlow Prado, who has a rare brain disorder, received a groundbreaking personalized treatment that could help her walk. Her condition, TUBB4A-related leukodystrophy, affects her ability to move and requires regular therapy. On October 15, she became the first girl in the world to receive this type of gene therapy.Key Facts
- Harlow Prado has a rare brain disorder called TUBB4A-related leukodystrophy.
- This disorder affects the myelin, which is the protective covering of nerve cells.
- Harlow has needed a walker and daily therapy sessions since birth.
- TUBB4A leukodystrophy is often misdiagnosed and needs genetic testing for proper identification.
- There is no known cure for the disorder, and its symptoms can lead to muscle issues and paralysis.
- A nonprofit organization called n-Lorem developed a treatment specifically for Harlow.
- Harlow's family raised $100,000 through crowdfunding to cover treatment costs.
- Harlow received her first dose of gene therapy on October 15, making her the first girl to get this treatment.
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