My name is Amy Price and I am the new Outreach Coordinator for the Leukodystrophy Family Forum. Leukodystrophy came into our lives much like it did so many; sitting in a hospital room, hearing the word from a doctor for the first time. We have three children with Metachromatic Leukodystrophy. Liviana and Giovanni were diagnosed at the same time in 2010 after Liviana was presenting with symptoms. She was almost 3 years old and graced our lives (appropriately her middle name is Grace) until she was 5.5 years old. Giovanni was presymptomatic at diagnosis and became the 2nd child in the world to undergo Gene Therapy for MLD in Milan, Italy, at the age of 12 months. Our big surprise Cecilia was born in 2013 as an even bigger surprise, a triplet. She was subsequently diagnosed at 3 months old, and also underwent Gene Therapy in Italy, as patient #15.
I can share my experiences related to the healing, as we cared for, loved and nurtured Liviana through her time on earth with us. I can also share the attempted healing of the heart, having her no longer by my side. I bring everyone our story of Hope, in Giovanni, who is in 1st grade and an amazing, smart, active, soccer loving boy and Cecilia who is 3.5 and currently coloring pictures at the table in front of me.
Please feel free to reach out to me with questions. I want to help make the forum a place of comfort and support. If I cannot answer the question, I will do my best to guide you in the right direction.