As many of you know, we lost our sweet girl to a devastating rare disease called Metachromatic Leukodystrophy. She was diagnosed at 27 months old, and soon after diagnosis lost all of her abilities, including movement, speech, eating or drinking, and even the ability to smile. However, the light in her eyes never left, and we had the honor and privilege of taking care of her, with the help of an amazing team of nurses, therapists, and teachers, until she died on December 10, 2010, at the age of eight and a half.
If we had MLD newborn screening in 2002 Olivia would have had timely access to a transplant and still be with us today. MLD newborn screening was supposed to launch in parts of New York State this month but has been delayed by the COVID crisis. But it’s coming soon! A federal RUSP nomination and 50 state implementation are being facilitated by MLD Foundation.
I (Christine) am on MLD Foundation’s Board of Directors and I need to share that we need your help in two ways … financially, and as constituents in every state as implement MLD newborn screening. Your registration at MLDnewbornScreening.org and a donation in Olivia’s name are critical.
For those of you who knew Olivia, you know how difficult her journey was. And that’s why Eric and I have remained involved with the MLD Foundation; to support other families and help in any we can those who are dealing with loved ones going through this awful, heartbreaking experience. There remains no cure, but the Foundation, in addition to supporting families worldwide, works tirelessly with organizations working towards a cure. In memory of our Olivia, and in honor of all the other kids and adults like her, we ask that you consider making a donation to the MLD Foundation in celebration of Olivia and her birthday.
A letter to Olivia from her brothers: [Monday, May 11, 2015]
We miss you and we love you. We think about you all the time and wish you were here. We remember playing in your room next to your bed while you were resting. We remember helping to take care of you by giving you medicine and food in your feeding tube. We always liked rubbing your arms when they would shake and you couldn’t stop them. We remember how you smelled. We remember helping clear your nose with your suction machine. We remember snuggling with you in your bed and reading our favorite books to you. We remember all the people who would come over to our house to help take care of you.
Even though you’re not here with us, you are always our big sister and we love you.
Your little brothers,
Carter and Will