Be our Superhero !
June 09, 2016
Sweet and Spunky Savannah
My daughter Savannah was born a sweet healthy baby girl on March 18,2002. As she grew she sometimes had trouble with her balance and after a fall at daycare at the age of four we went to her pediatrician where she was diagnosed with having ataxia and an MRI was scheduled for March 27,2006.
Just nine days after her fourth birthday my parents and I were sitting in a neurologists office being told that my daughter had what they thought was metachromatic leukodystrophy (MLD). Never having heard anything about leukodystrophies before. We had our blood sent to Prof. M.S. (Marjo) van der Knaap and she discovered that Savannah actually has Vanishing White Matter (VWM) Leukodystrophy.
I cried for days not knowing how long I would have my only child.
Today — Savannah is now 14 years old. She loves to sing, tell stories and be as independent as possible. She is in a wheelchair a big part of her day and does have more issues with her legs and balance yet never gives up trying to do what she can.
Savannah is a sweet spirit who touches everyone she meets and I am very thankful for having amazing family and friends who support us through this journey that we are on.
Let’s raise awareness and Find a Cure for VWM !
Do what you can… Share Savannah’s story. Send her dedicated family a good thought.
Donate your time or heart to a cause at some point this month. Talk with your friends and families about the VWM stories ..
Donate if you can,even if it is small amount. Thank you !