Laura Egan: Carer of the Year finalist

Laura Egan discovered there was no specialist care available when her daughter Alanna was diagnosed with a rare genetic condition, called Koolen-de Vries syndrome, which affects her in many ways.

Alanna was diagnosed in 2011, and when Laura went looking for support on social media, she could find none in Ireland.

“There was absolutely nothing in this country for families who had a child with a rare condition,” said Laura. “When Alanna was seen in Crumlin Hospital, we were given contact information for a UK charity, but there was nothing in Ireland. That led to us setting up Rare Ireland in 2017, which is our own group for parents, and we became a national charity.”

Alanna, who was the second person in Ireland diagnosed with Koolen-de Vries syndrome will be 24 years old in October, and needs full-time care.

“When Alanna was first diagnosed, we found it daunting for an Irish family to be given contact for a support group in the UK, and we felt that support was badly needed in Ireland,” said Laura. “We first set up the group with two families, and now there are 2000 families from all over the country.”

The Rare Ireland group generally meets online and from time to time, in person. “We host a conference once a year, and this will be our third year of doing that,” said Laura. “At the last two conferences, we had professionals who work in the field of rare diseases. It’s important to link in with professionals because they are seeing our children in clinics and doing new research, which is what these children need.”

Laura said she has seen no improvement in care for children with rare diseases in Ireland since she founded Rare Ireland. She said that Family Carers Ireland do their best, but they are limited in what they can do and, from the state, there is no help.

“I’m caring for Alanna since I was 19 years old, so I’m a full-time carer for most of my adult life. It’s great to see awards like this because it acknowledges the work that carers do,” she said.

The other Carer of the Year finalists are Lisa Malone and Fiona McCormack.

The Westmeath Independent Community & Sports Awards 2024 takes place at the Shamrock Lodge Hotel on Thursday.

The Carer of the Year category at the Westmeath Independent Community & Sports Awards 2024 is sponsored by Byrne Carolan Cunningham LLP