Cullen Johns journey to fight MLD

Hi, my name is David DeBoer, and I am fundraising for my 9-year-old nephew, Cullen Johns. Back in February 2022, after several days in Lurie Children's hospital in Chicago, Amy and Travis Johns received the news that no parent wanted to hear. Their son Cullen was diagnosed with a rare genetic disorder called Metachromatic Leukodystrophy (MLD). There is no cure for MLD. However, the family was given great hope when we learned that Cullen was one of six children in the world to qualify for a gene therapy clinical trial in Milan, Italy. It is truly a miracle and their best chance to stop or slow the progression of MLD. This study requires them to live in Italy for several months while he undergoes chemotherapy and stem cell transplant. While there are so many unkowns and possible future challenges, we hope to give Cullen the best chance for a bright future. The clinical study requires two adults to be in Italy full-time during the trial, which could be several months. Also, the degenerative effects of MLD may potentially require long-term medical care. We plan to use these funds to help support Cullen's family during this difficult time.