Galway activist says donation of baby’s umbilical cord saved her life

To mark Rare Disease Day 2024, a disability activist from Galway has said that the donation of a baby's umbilical cord saved her life.

Emma Ward, a disabled Irish traveller activist and journalist, shared her experience about Mucopolysaccharidosis type 1 (MPS1), more commonly known as Hurler syndrome, which affects 1 in every 100,000 babies. 

Hurler syndrome is a condition that affects children with an abnormal accumulation of complex sugars in their cells, which affects many of the systems in their bodies. Hurler syndrome is currently divided into two subtypes, severe and attenuated. It is one of the 50 diseases classified as lysosomal storage disorders (LSD), where affect genetic variations disrupt the normal activity of lysosomes in human cells. 

In a bid to raise awareness on Rare Disease Day 2024, which is celebrated on February 29 during leap years, the Athenry native wanted to share her story and details of how an umbilical cord saved her life.

"MPS1 is a condition where your body doesn't have enough enzymes to break down sugar molecules. The condition causes skeletal/joint abnormalities, distinct facial characteristics, issues with cognitive development, heart and lung (respiratory) problems and an enlarged liver and spleen. I say it's commonly known but unless it affects you or someone you know it's never heard of it," explained Emma on X, formerly known as Twitter.

Emma says that she suffers from the mildest form of the condition, although she notes it still affects her.

"I had to have a stem cell bone marrow transplant when I was 9 months old which helped most of my symptoms, a fun fact is my donor match was from Liverpool, so I'm genetically Irish and ethically an Irish Traveller but 50% of my blood is Liverpool blood. All babies born with this condition needs to have a stem cell bone marrow transplant as soon as possible, preferably before they are a year old, to survive," Emma said.

Emma hopes sharing her story will raise awareness on the condition, and encourage mothers to donate their babies' umbilical cords.

"I hope to bring more awareness about it this year as it might help with getting more bone marrow transplant matches because it is unfortunately hard to find those matches, I can't stress this enough, if you're pregnant please consider donating your babies umbilical cord because it was that that saved my life and it could potentially save another baby's life," she said.

The activist explained that the condition affected her hips, which are "smaller and weaker than average". Therefore, she is a wheelchair user and recently had a hip replacement surgery. 

Her nephew, Patrick, is also affected by the condition. 

"He was born with the same type of Hurler Syndrome as me and he is doing well, and I hope to teach him that his disability doesn't define him like it doesn't define me, it's a small part of us both and not the whole picture and I want him to be able to grow up in a more accessible and inclusive environment and country, that's why I fight to make real, genuine and good changes for every person with a disability in Ireland because we deserve better and more equal and fair rights like every non-disabled person!," she added.