CHOOSE JOY For Charlotte

July 31, 2018 was the day we were given devastating news: the reason our (then) 2 year old daughter Charlotte was not walking and seemed to be regressing in skills was due to a rare, progressive, horrible genetic disease called Metachromatic Leukodystrophy. It has no cure. We could not believe what we were being told by physicians, and now we are living it daily -- Char can no longer talk, eat by mouth, or move her body. She still seems to maintain some vision and hearing but it is hard to say for sure. In the hospital, we vowed to CHOOSE JOY for Charlotte and focus on her best quality of life. Charlotte is now 4 and has a sister Camille (6) and brother Lochlan (2), who are most thankfully unaffected, but were both found to also be carriers for this disease. On the anniversary of Charlotte's diagnosis, we have made a decision to spend the day focusing on joyful moments and acts of kindness in Charlotte's honor. Please help us honor Char this July 31st by participating in this fundraising campaign that helps families affected by MLD and is working towards newborn screening!