When my husband Dave and I learned that two of our three daughters had a fatal genetic disease, we entered the kind of nightmare for which no parent can fully prepare. Both girls — Keira and Livvy — were diagnosed with metachromatic leukodystrophy, or MLD, a rare degenerative disorder that destroys the nervous system and gradually robs children of the ability to walk, speak, swallow, and ultimately survive.
But Keira had something that Livvy did not: time.
Keira’s disease was identified early enough for her to qualify for an experimental gene therapy that was unavailable in the United States. To save her life, our family relocated to Italy for five months and raised roughly $500,000 so she could receive treatment. Keira became the 32nd child in the world to undergo the therapy. Today, she is a thriving 6-year-old with zero symptoms — running, laughing, attending school, and living the kind of childhood we once feared she might never have.
Livvy was not as fortunate. By the time doctors diagnosed her, the disease had already progressed too far for the treatment to work. While we were fighting overseas to save one daughter, we were also forced to watch our other daughter quickly deteriorate. In just three months, she lost the ability to walk, then talk, then became tube-fed. Now she is in hospice at age 8, taking 11 medications a day to stay pain-free.
