Monday 16 September 2019

'There is no other child in the world like Tom' - Dubs legend John O'Leary speaks of pride in son born with rare condition

Picture by Shane O'Neill, SON Photographic
Picture by Shane O'Neill, SON Photographic

Esther McCarthy

Dublin GAA legend John O’Leary has spoken of his pride in his son Tom, who continues to hit major milestones despite being born with a rare condition which leaves him with many health and developmental issues.

The eight year old was born with a rare chromosomal disorder  -  but continues to thrive through hard work and specialised therapies, according to his dad, a double-All Ireland winner in goal for Dublin.

It was feared that Tom might never be able to walk unaided - but the pace at which he pulls his loved ones, including devoted big brother Jack, uphill in Dublin’s Phoenix Park shows his extraordinary achievements.

Now John and Tom’s mum Catherine have told how they dream of one day hearing him speak for the first time. “You do a lot of guessing, you’d love to know what he’s thinking,” said John. “We do think he’s making progress, but you have no sense of what that progress is going to be.

Picture by Shane O'Neill, SON Photographic
Picture by Shane O'Neill, SON Photographic

“There is no other child in the world like Tom as his condition is so rare."

“We’d love him to be able to call us,” added Catherine. “Some milestones with Tom have been massive, for example the first time he gave me a hug. If he could call us that would be the icing on the cake.”

Tom’s personality continues to flourish and he makes them all laugh with his devilment, according to his dad. He joked how Tom will hand him the remote to change channels if he doesn’t like what’s on TV, or will playfully pull his grandmother off his favourite chair if he wants to sit on it.

Tom was born with a heart condition and a very rare chromosomal disorder and the family says the support of Irish charity Jack and Jill proved to be a life-changer for Tom and the family. The charity provides respite and support services and home nursing care to many Irish children like Tom. He family and the charity work hard to ensure that Tom can realise his greatest potentials and he has recently benefited greatly from music therapy, according to Catherine.

John and his family will lead the Dublin ‘Up the Hill for Jack and Jill’ fundraising challenge on Sunday 22nd of September.

The 3km walk will set off from the picturesque Magazine Fort in Phoenix Park. People can register their support for €16 at - equivalent to the cost of one hour of home-nursing care. Numerous other walks and events are being planned throughout the country.

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