Hello all,
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.
We all want to spend a better lifestyle and do best to best for our children in the future. Upon this, all the things in my mind I give my perfect resume reviews include the best ideas to get a better life in the future.
Please feel freee to follow our page💜❤
https://www.facebook.com/Saras-Journey-hope-For-A-Cure-189361368297897/
Helloo.she is so beautiful.
Our fbook page is Sara's Journey and Hope for a cure.
Can you post your contact info?
Hello! My name is Amber. My daughter Jordyn was diagnosed in 2015 with Alexander disease, 2 months shy of her 2nd birthday. We started a Facebook page, Jordyn's Beautiful Life, to spread awareness and keep everyone updated. My daughter is doing fantastic! She has physical therapy, speech, and OT in a school and outpatient setting. Thank you for reaching out. I look forward to getting to know you!
Forgot to add she is 3years and 3months old
Hello Amy.
My little girl Sara was diagnosed with leukodystrophy this past august at ACH in Calgary.Canada.
Her Metabolics Genetics Dr send whole exom sequencing to Helsinki right away and waiting for results around Oct 10.So far her Team of Drs excluded all the most common and rare forms suspeting she suffers of an extremely rae form of leukodystropgy.to say i am heartbroken is the least.Sara is blind(severe bilateral optic nerve hypoplasia).nonverbal.exclusevly GTube fed and tons of other condtions.
Reading ypur story is giving me home.
May littlr Liviana RIP(love her name)and God bless your family and give you strenght always.will keep you in my prayers.💙💙💙💙💙💙💙💙