“Together we achieve more; There are two things we should give our children: one is roots, the other is wings.”
– Author unknown
Our MSD Journey
What did it feel like finding out your child has Multiple Sulfates Deficiency (MSD)?
When we first learned Liam had Multiple Sulfatase Deficiency our world fell apart. We did not know how we would get past this tragedy. We felt despair, anger, and hopelessness. We were shocked to learn our child had a disease that was so rare.
How has MSD affected your children?
Liam was born with tetralogy of fallot, requiring two open heart surgeries. He is hypotonic, has hearing loss, failure to thrive, and ichthyosis. His motor skills are very delayed.
How has MSD affected your entire family?
MSD has changed our lives completely. Since the day Liam was born, we have been in and out of the hospital, going to many doctor appointments, and he undergoes physical and occupational therapy. This has impacted our family emotionally, financially, and our overall well-being. Simple daily activities we took for granted have now become obstacles. On the positive side, Liam has taught us to appreciate our health, family, and our love for one another. We have also learned that it has made us stronger as individuals and as a family.
What is the hardest part about being an MSD family?
The hardest part of being an MSD family is the fear of watching Liam suffer slowly and one day not be with us. It is difficult to know that he may not progress more than what we see now and not be able to see him reach milestones like a typical infant.
What are the biggest misconceptions people have about being an MSD parent?
That MSD is so rare that you really have no idea what symptoms your child will exhibit, when their symptoms will worsen, or how long they have to live. It is truly scary to have no idea what your child’s future will look like.
What is one thing you would ask from the world?
One thing I would ask is for people to spread awareness and help us raise funds.
Why are you asking for donations to the foundation?
We are asking people to donate to this foundation because for our MSD families to learn that treatment is possible but funding is the only thing holding it back is absolutely heartbreaking.
Latest News?
Liam’s second open heart surgery has been completed. He is such a happy infant but unfortunately is hypotonic and has been experiencing weight loss. He will be needing a g tube soon.
Let’s Connect
Connect with MSD families and get valuable information from medical researchers and doctors.