Orla

What did it feel like finding out your child has Multiple Sulfates Deficiency (MSD)?

A living nightmare. We couldn’t bear it. We just cried. It was the worst possible thing you could ever hear. We felt helpless and just couldn’t believe this was happening to our little family.

How has MSD affected your children?

After Orla’s 2nd Birthday, she got a viral infection and lost some of her abilities such as some of her fine motor skills. The majority of her skills came back, but not all. Then in October, she lost the ability to speak, play, laugh, sit up, and stand up all so suddenly in a matter of days. It was the scariest and biggest shock of our lives. We had to go into hospital after this happened. There was a period of time when we spent more of our time in hospitals for months rather than at home. We even had to rush Orla there on Christmas Day. We live in constant fear of that happening again. Her abilities did not come back this time.

How has MSD affected your entire family?

Everyone is heartbroken & finding it difficult to watch all of us suffer, especially Orla. Everyone misses Orla’s amazing smile and infectious laugh.

What is the hardest part about being an MSD family?

Having to see your child suffer & feeling completely helpless. We pray every day that we are going to wake up from this devastating nightmare and have our happy, healthy little girl back.

What are the biggest misconceptions people have about being an MSD parent?

Even though Orla was meeting her milestones, one day she just lost every ability we had worked so hard to achieve. It was soul-destroying to witness. I thought she would recover and get them all back.

What is one thing you would tell people about MSD?

We need people to donate as there is treatment available and we need your help to make our wish come true.

What is one thing you would ask from the world?

Help give our children a fighting chance to get the cure and stop other families from having to suffer the same way we have.

Why are you asking for donations to the foundation?

Quite simply without as much help and kindness from others, we cannot save our children.

Latest News?

We are finally at a stable place and are focussing on making memories as a family. However, at the back of our minds we are constantly on edge and live in fear of watching Orla get worse.