News | 11 months ago

Kildare mum Tina O'Kelly has shared a video of her 21-year-old daughter Colleen in agony and pleaded with Health Minister Simon Harris for a surgery date.

Colleen O'Kelly has Joubert Syndrome and has now been waiting for an appointment for two years just to get on the list for scoliosis surgery.

Her mum Tina says that Colleen's condition will worsen, unless she is granted surgery. The rate of curvature of her daughter's spine is at 97%, and apart from causing Colleen to live with agonising chronic pain, it significantly increases her risk of lung collapse, pneumonia, and respiratory infections.

Tina spoke to HerFamily about the heartbreaking situation,

"I wish that the HSE management and the government would stop blaming each other and just get together to get the root of this mess.

The HSE says it's caused by a lack of money and the government say that it's not a lack of money that's the problem, but rather mismanagement of it.

While they are busy squabbling with each other nothing is getting done."

The Naas mum explained that her 21-year-old daughter has already undergone a kidney transplant but unfortunately Colleen still has no date for surgery to correct the painful curvature of her spine,

"When Colleen turned 18 she had to be transferred from the care of Crumlin to Tallaght hospital as an adult patient. Her doctor in Crumlin essentially had to write a letter referring her to himself - from one of his patient lists to another.

She has waited two years just to get on another waiting list, she has been on the surgery waiting list since last August. The secretary said she'd ask the doctor for a 7th of March listing but I have heard nothing."

Tina told us that Colleen is a fighter who has been through so much but has managed to keep a smile on her face,

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"She is normally such a happy, happy person. She has flown through her transplant...through everything...with a smile on her face. That's why it's so heartbreaking to see her suffering like this now. She doesn't have to suffer like this. This is avoidable."

Tina says that she agonised over sharing a video of her daughter crying in pain, but she wants people to see the completely avoidable reality that they live with on a daily basis,

"Everyone that knows Colleen knows how amazingly happy she is. Lately her scoliosis has really been causing awful problems for her and it's heartbreaking. She has no date for surgery. We have no idea when it will be.

This is the reality of living with this condition. It's getting worse and compromising her health that we have fought so hard for all her life. It's compromising her kidney transplant.

We wait every day for word from Tallaght.

We want her pain to end - she's been through enough - and call on Simon Harris to fix this. "

Do you have a child on one of Ireland's lengthy waiting lists? Let us know your experiences and thoughts in the Facebook comments. You can also join the conversation on Twitter @HerFamilydotie

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