‘I’ve fought 14 years to get Katie surgery’

IN 2022, The Echo highlighted the story of a Cork teenager who had surgery as a child to fulfil her dream of walking. Katie Byrne now fears she will end up back in a wheelchair unless she can fund treatment abroad.

Katie, who lives in Cobh with her family, was diagnosed with cerebral palsy at 17 months old.

It was also discovered then that she had hip dysplasia, which means that the hip joint can become partially or completely dislocated.

As she grew, she had to use a wheelchair and walking frame, but in 2014, family, friends, and her local community raised €60,000 for her to have surgery at St Louis Children’s Hospital in the US.

Katie, who was six years old at the time, had several weeks of surgery and intense physiotherapy.

A decade later, the transition-year student has again become reliant on crutches and her wheelchair and is in need of further surgery.

Now, Katie and her mother, Antoinette, are fundraising so that she can have surgery in Florida to correct her dislocated hip, as well as to correct a twisted femur and a fractured pelvis.

Some €300,000 will be needed for Katie’s travel costs, medical treatment, and expenses at the Paley Orthopaedic and Spine Institute in Florida.

She will also require intensive physiotherapy after treatments.

To date, more than €20,000 has been raised.

Speaking to The Echo, Antoinette hit out at the fact that Katie cannot access the surgery she needs in Ireland, and she called on the Government to help her daughter to get care abroad.

“We’re still waiting, still fighting, and still nowhere near our fundraising target,” Antoinette said. She became emotional during a radio interview recently while speaking about Katie’s struggles.

“Pat Buckley, Sinn Féin TD for east Cork, is fighting tooth and nail to try and get the Government and the HSE to at least pay for Katie’s surgery in Florida, because I cannot find a doctor anywhere in Ireland, or in Europe, willing to operate on her,” Antoinette said.

“He has brought Katie’s case up twice in the Dáil for her and even with that happening he is being ignored.

“We can’t use treatment abroad because the surgery is in Florida and there is no fund available for anywhere else in the world through the HSE.

“I’ve emailed so many hospitals, at this stage, to see if I can find someone closer to home, but, so far, I’ve heard nothing back from any of them.” Antoinette also criticised Health Minister Stephen Donnelly and other Government TDs for failing to act following Mr Buckley’s statements in the Dáil.

“I’ve been fighting 14 years to get Katie surgery, so the least the HSE can do now is meet me halfway and pay for Katie’s surgery in America,” she said.

“Katie has spent more time out of school this year because of the pain she is in with her hip and her mental health, and it’s so unfair that she is the one missing school.

“Thankfully, it’s transition year, but if this continues on for much longer it’s going to affect her Leaving Cert and hinder her chances of becoming either a journalist or psychologist, which is what she wants to do when she finishes school.

“I’ll continue to fight to get Katie her surgery and if it means having to bring her to Florida, that’s what I will do,” Antoinette added.

“I just have to raise the funds first, which is really hard. We’re over 12 months fundraising now and we’ve only raised just over €20,000 to date,” she said.

Children’s Health Ireland and the Department of Health were contacted for comment.

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Access to wheelchair supports a struggle for children, says Cork mother

In 2019, The Echo highlighted the story of Mallow teenager Liam Lynch, then 15, who, after delays in being issued a powerchair by the HSE (he had outgrown his old one), was left in hospital with painful stage-four pressure sores.

At the time, the HSE said that funding restrictions meant that it could not process all applications for powerchairs immediately.

Liam came out of the ordeal without needing surgery and completed his Junior Cert.

But he was left with pressure sores that had to be daily dressed.

Then, in October 2021, Liam was in a similar predicament again as he faced delays in accessing vital equipment.

Now an adult, Liam is no longer with the children’s services in Cork, and has been moved to adult services within the HSE.

Speaking to The Echo, his mother, Gráinne, said: “It has been a tough road, but I think, since we left child services and moved in to adult services, things seem to move faster.

“Liam needed a new brace and we had it fittings in October and had the brace in December.

“I feel this would have taken quite a bit longer in child services.

“Also, because we were waiting so, so, so long for his chair, he grew out of the specially designed, moulded seating, which he had predicted would happen,” Gráinne added.

“So, the whole seating system had to be redesigned again for Liam.”

Gráinne said they met with the team in October 2023 and had the fitting in April this year.

She went on to describe the adult services as “amazing”.

“We were in communication with the various agencies at all times,” she said.

“It was an absolute pleasure to deal with. A very different story from working with child services,” she added.

“I feel if this had been in child services, we would still be waiting.”

A spokesperson for Cork Kerry Community Healthcare said, “CKCH has made substantial strides in enhancing our services, particularly in the area of aids and appliances provision.”

“Our primary care team has dedicated considerable efforts to implementing efficient systems aimed at reducing waiting times across the Cork and Kerry region.

“We are pleased to report that, currently, there are no individuals awaiting approval for a wheelchair within our region,” the spokesperson added.

“However, it’s important to note that for certain specialised equipment, there may be lead times associated with fitting, building, and delivery, which extend beyond the direct control of the HSE.

“Despite these external factors, we remain committed to providing timely and effective support to all individuals in need.

“CKCH remains fully committed to maintaining and improving upon these standards to ensure the continued satisfaction and well-being of service users.”

CKCH Response

Responding to The Echo’s series on Cork children and their fight for services, a spokesperson for CKCH said: “We sincerely regret that anyone in need of our services has to wait longer than either we, or they, would wish.

“We wholeheartedly apologise to the young people and children who have been waiting for longer times in accessing much-needed services and supports.

“Unfortunately, and despite incredibly hard work done by our teams, there are waiting lists in some services which are too long.

“While there are reasons as to why these waiting lists have occurred, we are aware that what’s important for children and their parents/guardians is the work under way to address waiting lists.

“Intensive work is under way in every part of our services to reduce waiting lists,” the spokesperson added.