O’Mearas set for Croke Park abseil in aid of Rare Ireland

A local mother and son will soon embark on one of the most exhilarating experiences of their lives – all in the good name of charity.

Erica O'Meara and her 19 year-old son, Jack - formerly long-time residents in Connaught Street, Athlone and now living in nearby Ballymahon - are among a group of brave participants who will abseil 144ft down the famous Hogan Stand in Croke Park to raise funds for the Rare Ireland charity, an organisation that supports families of children and young people living with rare conditions, and was established by Athlone woman, Laura Egan, and Louise O’Keeffe.

Erica and Jack themselves know first-hand the benefits of having the support of Rare Ireland, having in 2021 lost their loving husband and father, Trevor O'Meara, wo lived with NF1 microdeletion syndrome.

Trevor was well-known and much-loved locally and their daughter, 21-year-old Kira, also lives with NF1 microdeletion syndrome, a more rare and complex form of NF1, while their son, Kalvin (11) lives with duplication syndrome.

So now, Erica and Jack plan to give back to the charity that has helped them and many others in difficult times, with the abseiling challenge taking place on Sunday, March 8.

They are also encouraging other local people to contact them, if interested in taking part in the event, which happens shortly after the nationwide celebration of Rare Disease Day on Saturday, February 28, an occasion that will see several local landmarks, like Ss Peter & Paul's Church and the Town Bridge, lit-up in the blue, green, pink and purple colours synonymous with Rare Disease Day.

“Jack and I are doing something that genuinely scares the life out of us,” said Erica.

“It would be great to have as many people with us as possible. You don’t have to be mad, love heights or even do it alone. Everyone gets fully trained, fully harnessed, and fully supported and I am sure it's something we will remember for the rest of our lives. So, if ever anyone wanted to do something that scares you for a reason that really matters, then this is the chance, and I would urge anyone even half-thinking about doing it to get in touch with me via social media,” she added.

All funds raised on the day will go towards supporting vital services for the rare disease community.

“I want to share our story honestly, because honesty matters to me,” Erica said.

“Jack and I don’t have a rare condition, but we are doing this because our family does. Both Kira and Kalvin's syndromes are considered as ultra-rare. They’re so uncommon that there's only a handful of diagnosed cases in Ireland, which often means long delays, little information, and families figuring things out alone. So Rare Ireland hasn’t just been a charity to us, it’s been part of our lives, and it's a place where families are seen, understood, and not brushed-off because their condition is 'too rare'.”

“This abseil isn’t about bravery or drama. Instead, it’s about visibility, advocacy, and making sure rare families aren’t left navigating systems in silence. If people can donate, I thank them. Even if they can share this information, I thank them as well. But even reading this article can help raise awareness of Rare Ireland among people,” Erica said.

Jack is a former pupil at Scoil na gCeithre Máistrí in Athlone before continuing his education at St Matthew's NS, Ballymahon, and Mercy Secondary School (Ballymahon). He is now furthering his education at St Patrick's Pontifical College, Maynooth, where he studies Theology and Music. Kalvin is currently in fifth class in Ballymahon, while Kira is studying Early Childhood Education & Care at the TUS in Athlone.

Rare Ireland, whose offices are based at Pearse Street in Athlone, was set up by two mothers of young girls after both families witnessed the lack of support and information available at the time of their daughter’s diagnosis. Athlone woman Laura Egan and Louise O’Keeffe turned a very difficult time in their lives into a positive by providing the much needed support to the many Irish families living with rare conditions.

Rare Ireland now has almost 2,000 members, and their children's conditions include but are not limited to chromosome abnormalities, autoimmune diseases, neurological conditions and childhood cancers. A rare disease is defined as a condition that affects fewer than one in 2,000 individuals (in Europe).

There are 6,000 to 8,000 identified rare diseases. Some one in 17 people are living with a rare disease in Ireland, affecting almost 400,000 Irish people. Rare diseases are chronic, progressive, degenerative and often life-threatening.

They carry with them significant levels of morbidity and disability, including cognitive, developmental, intellectual, mental, physical and sensory challenges, and are a significant contributor to early foetal loss and perinatal mortality, as well as infant and child mortality.

The charity will be hosting an open Family Day at St Kieran's Community Centre, Athlone on February 28, and people should see their social media platforms for more information closer to the event. For those interested in donating to Erica and Jack's challenge, you can contact Erica at her Facebook page (Erica Chadwick O'Meara), or donate via www.idonate.ie/fundraiser/omeara