My daughter has a rare disease. We shouldn't have had to leave the US to save her life.

Four years ago, my daughter Olivia was diagnosed with a rare and aggressive genetic disorder that attacks the brain and nervous system. She was rapidly losing the ability to walk and talk, and doctors told us that the disease was progressive, meaning Olivia’s condition would continue to worsen and she would eventually need hospice care. She was not yet 2 years old.A few months later, our youngest daughter, Keira, was diagnosed with the same genetic disorder – metachromatic leukodystrophy (MLD).

But unlike her older sister, Keira had not yet begun to show symptoms. That bit of luck gave us the extraordinary opportunity to try to save her life, as a cutting-edge gene therapy treatment was showing promising results in nonsymptomatic MLD patients.

Kendra Riley is a business owner and mom of three girls, two of whom were diagnosed with MLD in 2020. She has since become an advocate for other rare-disease families like hers across the nation.