Local primary school rallies behind class-mate for Rare Disease Awareness Day

Kevin O'Neill

Fifth-class students at St Matthew's National School, Ballymahon recently marked Rare Disease Awareness Day by showing solidarity and support for one their class-mates.

Kalvin O'Meara (11), whose family were long-time residents at Connaught Street, Athlone and now live in Ballymahon, lives with a rare condition called duplication syndrome, a rare genetic disorder caused by having an extra copy of a specific chromosome segment, that can lead to intellectual disability, developmental delays, and distinct physical or behavioral features.

And according to his mother, Erica O'Meara, who sadly lost her husband, Trevor, in 2021 after he lived with the rare NF1 microdeletion syndrome, said that the efforts of the Ballymahon students to learn about rare diseases in such a compassionate way was “extremely moving”.

“It was something special,” said Erica, after Rare Disease Day took place throughout Ireland at the end of February.

“The whole school wore the stripes symbolising Rare Disease Day, but it was not just as a symbol, it was with real understanding behind it,” she added.

As part of their efforts, Kalvin's class-mates worked on projects about the statistics, facts and figures of rare conditions in Ireland, Europe and worldwide. They presented their findings to Erica, when she visited the school, and also to every other class in St Matthew's NS. They also spoke in detail to fellow school-goers about about inclusion, difference, resilience, and what it means to live with rare conditions.

Erica said that to the best of her knowledge, St Matthew's NS was the first school in Ireland to take on these projects.

“Days like this matter. As a mother, they matter even more. To watch your child stand in a room where difference is understood, instead of questioned, is very powerful. It's so important that we educate people that 'rare' doesnt mean invisible or to be alone. Rare is part of this and every community. What the students did wasn’t just about awareness – it really was acceptance in action,” said Erica, whose 21 year-old daughter Kira also lives with NF1 microdeletion syndrome.

“I am incredibly proud of Kalvin and his class-mates,” she said, while also praising the work and commitment to Kalvin's teachers, Mr Joyce and Mr O'Nualain, and the school principal, Mr Herbert Farrell

“They have a school willing to learn, listen and lead with kindness, and these qualities have to be encouraged and admired,” said Erica, who this weekend embarks on a major personal challenge in aid of the Rare Ireland charity. Erica and her 19 year-old son, Jack (also a former pupil at St Matthew's NS) will be among a group of brave participants to abseil 144ft down the famous Hogan Stand in Croke Park to raise funds for the charity, which was co-founded by Athlone woman Laura Egan and supports families of children and young people living with rare conditions.

Erica said that she is feeling extremely nervous about the challenge but that it's all for an extremely worthy cause, while also thanking anyone who has so far contributed to her and Jack's fundraising efforts on justgiving page www.idonate.ie/fundraiser/omeara

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 one in 17 people are living with a rare disease in Ireland, affecting almost 400,000 Irish people.

Jack is a former pupil at Scoil na gCeithre Máistrí in Athlone before continuing his education at St Matthew's NS and Mercy Secondary School, Ballymahon. He is now furthering his education at St Patrick's Pontifical College, Maynooth, where he studies Theology and Music.