Millie Grennan and Joe Somers, of Long Beach, have two children with the genetic disorder metachromatic leukodystrophy, MLD. One faces severe decline in the months ahead, one is starting a treatment that may save his life. At $4.25 million, the treatment is the most expensive in the world. The Food and Drug Administration approved Lenmeldy in 2024 after a clinical trial showed it helped prevent physical and cognitive damage for children with MLD. If left untreated, MLD causes severe cognitive and physical decline, including robbing children of their ability to talk, walk and swallow. It eventually ends in death, although life spans differ. #newyork #terminalillness #geneticdisorders Subscribe to our YouTube channel: bit.ly/3jLQjUN Subscribe to Newsday.com: newsday.com/socialoffer ~ FOLLOW US ON SOCIAL MEDIA ~ @newsday on Facebook, Instagram and Twitter. @newsday.tv on TikTok.