Since we have met and contact with other MSD families, we all have hope that one day we will wake up, get a message or phone call from a doctor that a treatment or a cure is available. This will be the day that all our problems will come to an end and we will finally be able to live like normal people.
Our MSD Journey
What did it feel like finding out your child has Multiple Sulfates Deficiency (MSD)?
When we have been told for the first time that Kamil and Nicole have MSD, our world shattered into pieces. The hardest part was when the Doctor told us there is nothing we can do for now. We couldn’t believe how rare the disease is and how rare our children are.
How has MSD affected your children?
MSD affected Kamil in a number of ways throughout 15 years, firstly Kamil had a problem with speaking, we first noticed this when he was 2 years old, then he started having problen with his eyes when he was 5.
When Kamil was 8 he started having behaviour problems just like in Autism.
At 9 years of age, Kamil’s muscles started to become stiff, we decided to do an MRI scan in his brain and that showed major changes inside of his brain.
From 12 years of age, there are major balance problems that Kamil had to deal with, which is why he needs support from us or his teacher at school whenever he decides to go somewhere or do something.
Although Nicole has MSD, she is not showing any symptoms. Nicole had many meetings with Specialists and they all agreed that she doesn’t need any extra help.
How has MSD affected your entire family?
We are getting a lot of support from our family, not only physically but also mentally, they help us get through out everyday problems.
Even though our family lives far away from us, they try to visit us as often as possible.
What is the hardest part about being an MSD family?
The hardest part of being a family with MSD children is that there is only a couple of patients with MSD which means that nearly no one in this world can relate or feel what us parents and siblings can feel.
What are the biggest misconceptions people have about being an MSD parent?
People think that being an MSD parent does not really affect our everyday lives, but it really does. We needed to leave all of our plans and decisions in the past. We need to make sure that our children are number 1 in everything we do.
What is one thing you would tell people about MSD?
I would like to tell everyone that even though MSD is very rare, it is still possible for anyone to have children with MSD, which is why we need to find a treatment or a cure very soon to prevent this.
What is one thing you would ask from the world?
I would like the world not to ignore people that are in need, we all need to help each other to survive.
Latest News?
Kamil’s teacher has told us that Kamil has progressed and he is able to hold a pen in his hand and he is able to draw on paper with it. He also tries to use a fork to feed himself in school and sometimes he manages to do it.
Nicole recently started going to a playgroup, she is very happy while playing with other children and she is learning and trying new things every session.
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