Our fight is not just for Willow but all children with MSD. All children deserve a chance to live.
Our MSD Journey
What did it feel like finding out your child has Multiple Sulfates Deficiency (MSD)?
Our world stopped when we heard the worst news, we were devastated.
How has MSD affected your children?
Willow can no longer walk, sit up, or swallow. She is on a feeding tube and can no longer move on her own.
How has MSD affected your entire family?
Our older girls struggle to maintain a “normal” life. Mom can’t do anything but caretaking and help push forward a treatment. Dad is sad about all the experiences Willow is missing out on. But we are grateful for the time we have and we take it one day at a time.
What is the hardest part about being an MSD family?
Watching your child slowly slip away. Knowing what is coming and not being able to protect her from it.
What are the biggest misconceptions people have about being an MSD parent?
That this couldn’t happen to them. We were the normal average family, with no history of medical issues in our family. Willow was born normal, we walked into the doctor’s office a regular family, and walked out with a death sentence.
What is one thing you would tell people about MSD?
There are treatments that can be done and our kids can be saved.
What is one thing you would ask from the world?
Don’t turn your head, don’t give up on our kids.
Why are you asking for donations to the foundation?
Be part of the change to cure a fatal condition. You have the opportunity to actually save lives. What better way to spend a few dollars?
Latest News?
Willow loves kids and people and she smiles and laughs a lot. She is stabilized and doing well right now.
Facebook: Cure MSD – Warriors For Willow
Twitter: @warriors4willow
Let’s Connect
Connect with MSD families and get valuable information from medical researchers and doctors.