Be strong while expecting a treatment and accepting the truth.
Our MSD Journey
What did it feel like finding out your child has Multiple Sulfates Deficiency (MSD)?
Initially we were sad about the suffering and that she is going to live for a short time. Later we have realized that at one point of time our life will be ending and we have to live life happy and peaceful. We have started practicing loving kindness, meditation and being happy. Now, we are making laughs for SAACHI.
How has MSD affected your children?
She has lost mobility, the ability to speak, and has swallowing difficulty.
How has MSD affected your entire family?
Our entire family members are worried about her life.
What is the hardest part about being an MSD family?
Explaining to the grandparents about how rare the condition is and how it is going to affect my child.
What is one thing you would ask from the world?
Consider knowing about the rare disease support for the clinical trials.
Why are you asking for donations to the foundation?
It will help all the MSD children who are suffering and in turn donors will receive happiness by supporting.
Latest News?
She has changes in behaviour, is unable to balance head and weight for more than 5 minutes.
Let’s Connect
Connect with MSD families and get valuable information from medical researchers and doctors.