by Colleen Kintner
Kristy was 6 years of age when she was diagnosed with Metachromatic Leukodystrophy.
We felt very lost and alone. We were blessed to have a quick diagnosis because Kristy’s pediatrician had studied with one of the experts here in California at UCLA. Bill looked up articles about leukodystrophy and the name Dr. Hugo Moser came up in the majority of them. Bill decided he needed more answers so he called Dr, Moser directly. As blessings would have it, Dr. Moser answered his call. That was the beginning of our 35 years of involvement in the ULF and friendship with the Moser family.
Kristy lived many years and in more stable health than was originally expected. She was almost 23 when she died. We know there are many reasons for this. One was her will to live. Another was faith and lots of prayers and a most important reason was from the information we learned at the ULF annual conferences. We had support, we learned care providing skills and Kristy knew we were all working with doctors to find treatment and cures.
Through years of attendance we became more involved in the leadership of this organization. After the former president died Bill stepped in to provide ongoing leadership becoming president of the ULF. Due to Bill’s increasing health issues we had to take a leave from attendance and leadership. After Bill’s death in 2016 I was asked to return to the Board of Directors and to regular attendance at the annual conference.
“You Are Not Alone,” is the ULF abiding statement. I can tell you that is absolutely true. For me and my family 35 years of involvement and attendance at annual conferences proves this. I look forward to meeting you all at this years conference.