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CHARITY’S APPEAL Family of boy with profound special needs call for greater supports and services

'Everything is a fight. The supports that are there are minuscule...'    

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Harry’s dad says he is always smiling

Harry’s dad says he is always smiling

Harry Cullen and family

Harry Cullen and family

/

Harry’s dad says he is always smiling

The family of a boy with profound special needs has called for greater supports and services for other children and their families.

Harry Cullen (11) was born with cerebral palsy and other additional needs.

Parents Jonathan and Mairead say he benefits greatly from respite services in his native Co Tipperary. But dad Jonathan said the State should do more to support children like Harry and their families.

"Everything is a fight. The supports that are there are minuscule. Only for the likes of Enable Ireland and Teach Saoirse in Nenagh you'd have nothing.

"It's a big bugbear of mine. I actually was a candidate in the last local elections and it would have been one of the things I would have been very vocal on, it would have been really looking at the inadequacies that are there in relation to families and support for families and people with special needs."

Harry, who hails from a popular GAA family in Templetuohy, Co Tipperary, was born with profound special needs following complications during his birth. He is a wheelchair user, is nonverbal and requires round-the-clock care. But the Harry Potter fan, whose favourite song is Tipp GAA anthem Slievenamon, is living life to his full potential thanks to the support of family, friends and his community.

"He's a very fun loving and affectionate young boy," said Jonathan. "If Harry doesn't have a smile on his face, you know there's something wrong. Whether it's our friends, neighbours and people in the area, or where he goes to school in Scoil Chormaic in Cashel, everybody says the same about Harry - he's a very happy child.

"While he can't speak, we know that he knows what's going on around him, we know that he knows what we're saying to him," said Jonathan. "He immediately talks back to us using his eyes and his face. While he mightn't be able to speak verbally to us, we do know that he understands us. And that makes a huge difference to us. And if he wants your attention, you will know very, very quickly!"

The Cullens, who have fundraised for charities which support kids with special needs, say Enable Ireland's respite services benefit not only Harry but the rest of the family.

"Only for the respite myself and Mairead and [Harry's brother] Leo get, it gives us an opportunity to do things that we wouldn't be able to do normally, even if it's only to go to a hotel for a night."

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Harry Cullen and family

Harry Cullen and family

Harry Cullen and family

 

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Mairead is primary carer to Harry and Jonathan said he feels more should be done to support family carers. Because the allowance is means tested, Mairead is not entitled to a carer's allowance - a policy which impacts hundreds of carers around the country.

"I don't believe that means testing is the right way to go. I believe that it should be based on the amount of care that a child needs. If a doctor decides that a child needs 24-hour care, for me that's enough to say somebody is entitled to a small bit of recognition from the State," says Jonathan.

The Cullen family is backing an upcoming fundraising appeal for Enable Ireland in partnership with Applegreen. The appeal takes place between November 25-28 and customers at Applegreen service stations around the country will be asked to donate €1 to raise funds for Enable Ireland services.

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