June 16, 2024

‘The only thing we can do is go and beg for an operation’ – Kilkenny mother pleads for her wheelchair bound son in ‘insufferable pain’

A mother of a Kilkenny boy, who suffers from a rare muscle-wasting disorder and a condition that is bending his spine, is travelling to Dublin today to beg doctors to perform a simple operation on his hip.

His family hopes the operation will provide him with an infinitely better standard of life.

14-year-old Callan boy, Ali.D Murnagh, has a condition called mitochondrial disorder. It’s a muscle-wasting condition, which confines him to a wheelchair. Added to this, Ali suffers from scoliosis, which is rapidly curving his spine. He also has a permanently dislocated hip because of his other conditions, which is causing him constant pain.

His mother, Mary Murnagh, says they cannot relieve Ali’s pain without an operation to fix the hip into place.

“We need this operation done now because Ali.D is in insufferable pain,” Mary told KilkennyNow.ie.

“Ali. D is non-verbal, and although he can’t tell us he is in pain, we know by how he reacts that he is suffering all the time.”

A very happy and observant young man, Ali.D attends school in St Patrick’s in Kilkenny five days a week. The rest of the time, the majority of his care is provided by his family.

Ali pictured with his monkey ‘Cody’ named after his hero Brian Cody

“Ali.D is on mid-term now, and until his father comes home from work, which could be eight or nine in the evening, I’m on my own. I have to use the hoists by myself to get him in and out of the chair, and I have to move him.

“Ali is confined to his wheelchair. His hip is now permanently dislocated and he has scoliosis. It is a lot for us to be taking on. But it’s a lot more for Ali.

“We are going up to the Children’s Hospital in Crumlin Friday (today) to beg them for an operation to have the hip fixed in place.

“He is in terrible pain now with the hip. Before the physio was able to put it back in, but it won’t stay in now -so the only thing we can do is go and beg for an operation,” Mary said.

Three years ago, a decision was made not to operate on Ali scoliosis.

Mary believes that decision added to the terrible situation Ali is in now. She is not asking to put Ali through an operation to fix his scoliosis, she and just want his hip fixed.

“Ali.D’s Mitochondrial disorder means he has weak muscle tone. The muscles around his hip are not strong enough to keep it in place.  We are begging them to fix it in with pins for a more permanent fix.

“I know by the reaction on his face when we move him, how much pain he is in. He is shifting in the chair, trying to get more comfortable when the hip is out. That makes it worse. That makes the pressure on his spine worse. That adds to the scoliosis.

“In one year, his scoliosis has gone from a 16% curvature to 36% curvature. We are quickly going to 50% curvature.

“The team he sees in Kilkenny and his carers in St Pats all think the same, if we fix the issue with his hip, he won’t be moving in his chair as much. That could control the scoliosis without the need for that 7.5 hour operation,” Mary said.

Lisa Buckley, one of Ali’s former special needs assistants and friend, has set up a gofundme page to raise money to provide Ali.D with a personal wheelchair accessible swing which she says would be a “great boost” for Ali.D.

It fundraiser can be found at www.gofundme.com/f/swingforAliD

But the most important thing for Ali, his family, his carers and his friends, is being able to provide him with a more comfortable standard of life. That campaign starts in Dublin today.

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