The hardest part of being an MSD family is the constant grief we carry knowing that our son doesn’t have a fair shot at life.
Our MSD Journey
What did it feel like finding out your child has Multiple Sulfates Deficiency (MSD)?
Devastating, shocked, and immediately defeated are a few of the emotions we felt as we received the diagnosis. We were instructed to read from a few websites and believe it or not the doctor said “I wish I could tell you there is a light at the end of the tunnel but there isn’t.” then suggested we take as much time as we needed before leaving the room. My husband and I were beside ourselves with this news.
How has MSD affected your children?
MSD has taken the few skills Ethan was able to obtain. He has lost all his mobility and his ability to feed orally.
How has MSD affected your entire family?
MSD has affected our family greatly, Ethan requires around the clock attention and that takes its toll on the time we are able to share with our daughter. It also dictates most if not all our decisions.
What is the hardest part about being an MSD family?
The hardest part of being an MSD family is the constant grief we carry knowing that our son doesn’t have a fair shot at life. Having to explain to someone that my son has a terminal disease and then dealing with the immediate disappointment and sadness in the inevitable.
What is one thing you would tell people about MSD?
MSD is a terrible disease and with their support we can help save kids just like Ethan.
What is one thing you would ask from the world?
We would ask that they help us get the awareness out there and they contribute what they can to help save these beautiful children’s lives.
Why are you asking for donations to the foundation?
We are asking people to donate to this foundation because we strongly support the cause. We agree with the foundation’s mission in the fight to cure MSD.
Latest News?
Ethan is a strong boy, he has been feeding via gtube for the past seven months, gaining weight and is doing well. We struggle with controlling his secretions and sleeping throughout the night. Just like anyone else, Ethan has his good days and his bad days. We rejoice on the good days and we do our best to learn on his bad days.
Facebook: https://www.facebook.com/strengthan/
Instagram: https://www.instagram.com/strengthan_msd/
Let’s Connect
Connect with MSD families and get valuable information from medical researchers and doctors.