Arkansas Fact Sheet
In August 2013, Chance Lyle’s four-year-old daughter, Emma, started
losing her balance more frequently, and needed help walking down
the stairs and feeding herself. Up to this point, Emma was independent, well-spoken, and a perfectly healthy girl in her father’s eyes. Chance sought out medical guidance and support to get to the bottom of her symptoms. By December, Chance received a phone confirming the life-changing diagnosis of metachromatic leukodystrophy.
In 2014 Emma could still laugh, even if she lost her speech. She was on a strict schedule with her medications and was immunocompromised, both of which made it difficult for Emma to continue school. In March of that year, Emma spoke her last words.
Emma loved all things girly, like painting her nails, lip gloss and princesses. Chance still dressed her up as a princess for trick or treating and took her to the beach. On August 28, 2017, Emma passed away after being under hospice care for about a month and being in and out of the hospital the entire year. Chance had no idea what MLD was before his daughter was diagnosed and to watch Emma suffer for four years was unbearable. He would never wish this upon his worst enemy and that’s why he advocates. Newborn screening would have made a huge impact because Emma would have been diagnosed earlier.
