Beverly Jones, a devoted mother, first connected with the United Leukodystrophy Foundation (ULF) after her young daughter, Krystal, was diagnosed with Metachromatic Leukodystrophy (MLD). Like so many families affected by leukodystrophy, Beverly and her family felt helpless and afraid.
When Krystal was just a year old, she began to show signs of MLD; struggling to swallow her food and she had a limp when she walked. Beverly and her family were devastated by the diagnosis, and Beverly began research to find a doctor that could provide the specialized care and support Krystal needed. Beverly found a doctor at Duke University who first diagnosed Krystal with MLD and also introduced her to ULF. From that moment, everything changed.
Beverly contacted ULF and was informed of the annual Patient and Family conference being held in DeKalb, Illinois. Beverly and her sister attended the conference, where she connected with doctors, nurses, and other families who truly understood her struggles. For the first time, she felt she wasn’t alone and shared “it changed my life.” The information and reassurance she received allowed her to return home with the knowledge to share with her pediatrician and care for Krystal with renewed confidence and hope.
Beverly reflected, “Krystal was a joy to care for. She had the best nurses and doctor. With the support from the United Leukodystrophy Foundation, her doctor, nurses, family and friends, Krystal was with us for 12 years despite the doctors saying she would live a year after the diagnosis. I will always give my full support to the ULF to assist other families that have been diagnosed with Leukodystrophy. I was so fortunate to have been able to attend the conference without worrying about finances, and other families should not have to be concerned about costs to be there. I’ll keep working to support fundraising efforts, so every family can attend, learn from experts, and feel the power of connection in this journey with leukodystrophy. We are not alone!”
Thankful for your generosity, this year, we’ve been able to bring families like Beverly’s and experts together, share knowledge, and expand programs for peer-to-peer support and education. But there’s more work to be done, and your help is essential for us to continue these efforts.