Losing a child has to be one of the most heart-wrenching experiences a family can encounter, yet losing a child when it could have been prevented is even more devastating. According to VUMC Reporter, the May family lost their son Dylan to rare Krabbe leukodystrophy disease back in 2009 when he was only 4-years-old. While Dylan passed the a newborn screening that checks for 69 different diseases with flying colors, Krabbe disease was not on the list.
Krabbe leukodystrophy is a rare genetic disease that results in neurological deterioration and leads to death. Most children don’t live past the age of 2. Currently, 1 out of 100,000 children are diagnosed with the disease. The only way it can be treated is with a stem cell transplant upon very early diagnosis. Yet, when symptoms start to onset, it’s often too late.
Dylan didn’t start showing symptoms until he was 7-months-old. He was missing normal baby milestones, and had difficulties sucking his thumb and sitting up by himself. At this age, he was already facing degeneration in his central nervous system. Sadly for Dylan and his family, by the time he was diagnosed at 9-months-old it was too late to treat. He continued to live longer than most do with the disease and passed away just 10-days prior to his 5th birthday.
The May family wanted to do everything in their power to make sure they could prevent this tragedy from happening to another family. Hunter’s Hope Foundation collaborated with Monroe Carell Jr. Children’s Hospital at Vanderbilt to bring about change in all aspects related to Krabbe disease. First and foremost, implementing newborn screening tests for the disease was a must. Early diagnosis leads to lives saved. Just in July of last year, Tennessee officially added the test and other leukodystrophies to the newborn screening and five other states are well on their way.
Sometimes it takes a tragedy for change. Thank you to the May family for making the world a little big brighter and helping to save lives.