Pavan Tailor

What did it feel like finding out your child has Multiple Sulfatase 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 “normal” redefined. We felt isolated due to the rarity and lack of internet/social media in the early days. It was gut-wrenching knowing research from pharmaceuticals was very unlikely due to the small numbers. Pavan was the first in our consultant’s long career and the first in the UK in 20 years.

How has MSD affected your children?

Pavan regressed very quickly soon after his second 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 his passing 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 that 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 who could afford a single penny/cent in the world donated, we would have enough money to research cures for all the rare and not-so-rare conditions.