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Friday 28 July 2017

Parents hope treatment will 'give them back their little boy'

Fergal and
Fran Kane,
with their
son JJ (9),
who is to
undergo
treatment at
Great
Ormond
Street
Hospital,
London, and
daughter Zoe
(7) at their
home in
Tallaght, Co
Dublin
Fergal and Fran Kane, with their son JJ (9), who is to undergo treatment at Great Ormond Street Hospital, London, and daughter Zoe (7) at their home in Tallaght, Co Dublin

Kevin Keane

AN IRISH boy with severe disabilities is beginning what his parents hope will be a life-changing regime of treatment in London today.

Nine-year-old JJ Kane suffers from juvenile arthritis and joint hypermobility -- a set of conditions that have left the child, who also has Down Syndrome, in a wheelchair.

He was referred by a consultant in Our Lady's Children's Hospital in Crumlin for treatment in London's Great Ormond Street Hospital.

But the HSE refused to fund this under the Treatment Abroad Scheme, as it believed the child could be cared for in Ireland.

However, thanks to the generosity of the public, who donated more than €15,000 through radio station 4fm, young JJ will this morning begin the treatment his parents desperately want him to have.

"He's all excited, he doesn't know what's going on, he thinks he's on a holiday," JJ's mother Fran Kane told the Irish Independent after arriving in London last night.

She said access to a paediatric podiatrist was the key element the family felt Great Ormond Street could help them with.

"At the moment he wears splints on his feet but we don't know if they are working because he can't tell us, so she (the paediatric podiatrist) will be able to assess this and will know what will work for him."

JJ will undergo two gruelling weeks of intensive rehabilitation and assessment, which his family hope will eventually allow him to leave his wheelchair behind.

"He's always in pain, he can't do stuff that other kids can do and this will be giving me back my little boy. I'll be giving out about him in six months' time hopefully when he'll be running around and driving me mad," Fran joked.

Although they are returning to Ireland for the weekend, the coming fortnight will be the longest Fran has ever spent apart from her husband Fergal and daughter Zoe (7).

Upset

"Zoe is very upset and JJ was looking for her earlier but everybody at home has rallied around so that will keep Zoe's mind off the fact that we are not there."

Speaking from the family home in Tallaght, Co Dublin, Fergal admitted that he and Zoe were already finding things tough.

"We want them back already but it's just something we'll have to get through."

Fergal said that if the specialists can deliver on their promises, it will be worth it.

"We are delighted that it has happened because at the start when he got refused (by the HSE) it was just devastating. We just have to hope now that what they said will come through."

Irish Independent

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