Dapper Dax

On November 30, 2015, we welcomed our perfect, seemingly healthy baby boy into the world.

Our lives were forever changed for the better, and we had never felt such love and joy. The first two years of his life were filled with nothing but joy and happiness as Dax met all his milestones on time until it came time for him to start walking.

We first noticed something may be wrong when he was 15 months old, and he hasn’t started walking yet. We began voicing our concerns to his pediatrician but were told to give him a little more time as all children reach milestones differently, and he would start walking when he’s ready. Still concerned, we were persistent and finally got a referral to a neurologist.

Dax got his first MRI on December 20, 2017. That is when our world turned upside down and our biggest fear became our reality. The MRI showed extensive white matter disease. At this point, we knew, he most likely had some type of leukodystrophy, but we did not know which one.

We were referred to the Department of Neurodevelpment in Rare Disorders at the Children’s Hospital of Pittsburgh ,where we had genetic testing that confirmed a diagnosis of Vanishing White Matter Disease (VWM).

Today, Dax has regressed some and uses both a wheelchair and walker to help maintain his independence.

Nothing can prepare you to hear the words “terminal,” “no treatment,” and “no cure” about your child, but we have hope in the promising research being performed on VWM disease.

HOPE that we will one day have a treatment for our sweet boy and can save his life!

Written by Dax’s mom

Do what you can…spread awareness. Share the stories. Talk about them with friends and family.

Whether you give time, money, effort or love… these kids need our help.

Small amounts of money can have outsize impact in the world of‪#‎VanishingWhiteMatterDisease‬ (VWM). Because ‪#‎leukodystrophies‬ are so rare, therefore research relies heavily on private donations. Even if it’s a small amount, please consider donating.