Live in the moment; make happy memories; keep smiling; don’t dwell on the past and don’t over-think the future, just take a day at a time. Life is a tapestry and you can choose to look at the back and see the chaos or you can look at the front and see the utter beauty. When someone you love becomes a memory, the memory becomes a treasure.
Our MSD Journey
What did it feel like finding out your child has Multiple Sulfates Deficiency (MSD)?
Our world ended as we knew it and felt somewhat like a bereavement process, our dreams had to be shelved and our new “normality” redefined, felt isolated due to the rarity and lack of internet/social media in the early days to reach out. Gut-wrenching knowing research from pharmaceuticals was very unlikely due to the small numbers, Pavan was the first in the consultant’s long career and first in the UK for 20 years.
How has MSD affected your children?
Pavan regressed very quickly soon after his 2nd birthday and lost almost all ability and pre-learned skills within a month of the onset of the symptomatic stage.
How has losing your child to MSD affected your entire family?
Pavan’s routine was our life for 19 years and left a very large void. We have felt the sad loss of other family members during our lives, after they lived long happy lives, but losing Pavan was the most devastating loss and affected us deeply.
What is the hardest part about being an MSD family?
People don’t always understand how profoundly it affects the family. Knowing it’s so rare with low numbers, no one seemed to want to help research a cure.
What are the biggest misconceptions people have about being an MSD parent?
They don’t realize it requires 24/7 care and mental and physical stresses get compounded over the child’s lifetime.
What is one thing you would tell people about MSD?
Don’t underestimate it because it doesn’t have facial disfigurement or the ‘Cancer’ label.
What is one thing you would ask from the world?
If all those that could afford 1 Penny/Cent in the world, we would have enough money to research cures for all the rare and not-so-rare conditions.
Let’s Connect
Connect with MSD families and get valuable information from medical researchers and doctors.