Thursday 20 October 2016

Birthday boy Jack gets an extra special gift - a poem penned by his godmother

Jane O'Faherty

Published 05/08/2015 | 02:30

Jack McNiffe with his mum Aisling and aunt Trína, and Beth his dog. Photo: Frank McGrath
Jack McNiffe with his mum Aisling and aunt Trína, and Beth his dog. Photo: Frank McGrath

Turning 10 is a special day for any child, but for one little "warrior" the landmark was a greater cause for celebration.

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Jack McNiffe, from Straffan, Co Kildare, is believed to be the only child in the world with Down's Syndrome and a rare inflammatory disease.

He spent the first three years of his young life in hospital, where he was dependent on oxygen. He has undergone heart surgery and still requires 24-hour care.

Proud mum Aisling McNiffe said Jack reached a milestone when he celebrated his birthday last week with a special afternoon tea with his big sister Molly (11).

"He loves his birthday. He thinks it goes on for a week, because we sing 'Happy birthday Jack' all week," said Aisling. "He's very communicative, he tries to talk and he's a good mimic. He loves his aunties, granny and granddad."

Jack was diagnosed with Down's Syndrome at birth. However, it was another 18 months before he was diagnosed with a rare auto-inflammatory degenerative disease called Cinca (Chronic Infantile Neurological, Cutaneous, and Articular) Syndrome.

Symptoms include high temperatures, rashes, abdominal cramps and severe headaches on a regular basis.

"When he was diagnosed, he was the only person in Ireland with Cinca," said Aisling.

Only a few hundred people worldwide have been diagnosed with the extremely rare syndrome and Aisling believes Jack is the only person in the world with both Down's Syndrome and Cinca.

Jack's condition has left him severely disabled - both physically and intellectually - but Aisling told the Irish Independent that her son is "a warrior". "He's had so many tests in his life. He has arthritis and is in a wheelchair the whole time," said Aisling (42).

Among Jack's best birthday presents this year was a poem written by Aisling's sister, Trína O'Loughlin. In it, she described Jack as "our forever baby... From the land of Tír na nÓg" whose laugh is "full of magic". Moved by 'A Poem for Jack on his 10th Birthday', Aisling sent it to the Irish Independent.

Trína, who is Jack's godmother, is a primary school teacher who also specialises in play therapy for children with special needs.

Jack spent three years in Our Lady's Children Hospital, Crumlin, but now lives at home with his mother, sister and guide dog Beth.

He also gets respite with the LauraLynn Children's Hospice once a month and is visited by nurses regularly.

Irish Independent

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