'I wouldn’t be here without it': Baby's umbilical cord donation saved Emma's life

Emma Ward at her 21st birthday party. 'I was always interested in knowing about my condition when I was in the hospital and my parents would describe it as a blood condition.'

The donation of an umbilical cord from a baby boy was enough to save the life of one of the 410,000 people in Ireland living with a rare disease.

Without that act, disability activist Emma Ward said: "I wouldn’t be here without it."

Ms Ward shared her experience to mark Rare Disease Day, a global event usually celebrated on February 28, but on February 29 during leap years as it is the ‘rarest’ day of the year.

A Traveller from Athenry in Galway, Ms Ward lives with mucopolysaccharidoses type one (MPS I), known as Hurler Syndrome.

MPS I is a lysosomal storage condition, which hinders the body’s ability to break down long-chained sugar molecules and impacts how they function, while putting pressure on her organs.

“I was always interested in knowing about my condition when I was in the hospital and my parents would describe it as a blood condition. It is very normal to me,” Ms Ward said.

MPS is one of 7,000 identified conditions that is celebrated on Rare Disease Day. Rare diseases impact more than 410,000 people in Ireland and 300 million worldwide. 

One in 17 people will live with a rare disease at some point in their lives, and about 70% of rare diseases affect children, young people, and their families, with a significant portion being chronic conditions.

Some 35% of these conditions are life-limiting or life-threatening, often leading to premature death.

Emma at five years of age.

As in Ms Ward's case, the majority of people living with MPS I require a bone marrow transplant to prolong their lifespan and limit the damage done to their body.

However, finding a match is challenging as it is unlikely that a blood relation will have a bone marrow that will match.

Ms Ward’s match was provided by an umbilical cord from a baby boy from Liverpool, when she was nine months old.

“I waited for six months to get a bone marrow transplant and I was nine months old when it happened. The hospitals struggled to find a match as getting a blood relation match is very uncommon, so it is hard to find a match,” she added.

Emma Ward at 10 months old, two weeks after her bone marrow transplant.

Ms Ward is a wheelchair user and recently underwent hip replacement surgery last month after 11 years of waiting.

“My hip bones are smaller than average and are far more fragile. I had to wait 11 years for a hip replacement,” she added.

Ms Ward hopes to return to a journalism PLC course in September. She enrolled in the course at Galway Technical Institute in Galway city last year but had to leave due to her operation.

“Raising awareness about Hurler Syndrome is important because it could give someone the facts that could possibly save someone’s life,” Ms Ward said.

Emma Ward: 'My hip bones are smaller than average and are far more fragile. I had to wait 11 years for a hip replacement.'

A new initiative called the All-Ireland Children and Young Adults Research Advisory Group for Rare Diseases (RAiN CRAG) was launched ahead of this year’s Rare Disease Day.

It is spearheaded by the All-Island Interdisciplinary Rare Disease Research Network (RAiN), an initiative that addresses the unique needs of children and young people affected by rare diseases.

RAiN CRAG is the first of its kind in Ireland and aims to amplify the voices of children living with rare diseases between the ages of six and 17.