Fundraiser sent Cork girl with cerebral palsy and hip dysplasia to the US for treatment at the age of six, but at 15 she gets little care in Ireland
A teenage girl who was the beneficiary of a fundraising campaign for surgery in the United States is now suffering again due to the lack of health services in Ireland, her mother has said.
Katie Byrne was diagnosed with cerebral palsy at 17 months.
At the same time, it was noted she had hip dysplasia – a condition that allows the hip joint to 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 in Cork raised €60,000 for her to undergo surgery at St Louis Children’s Hospital in the US.
Katie, who was six years old at the time, underwent several weeks of surgery and intense physiotherapy.
Almost a decade later, she continues to walk independently at home, but relies on crutches when she is out and about.
With regular physio, the now 15-year-old does her utmost to retain her body strength, but her hip has become 40pc dislocated over time.
Her mother, Antoinette, said she is in a lot of pain and claims she is getting little or no help from Ireland’s health services.
“Katie is very independent and stubborn, and no matter what obstacle is put in her way she always finds a way to overcome it,” she said.
“She is in pain, but sadly she has become used to it and can control her falls because she is aware when it’s going to happen.
“But she still does fall and it’s horrible to see her on the ground, struggling to get up again.
“It is so frustrating because paediatricians only get to see her for five minutes. They don’t see the day-to-day struggles she has. Although her hip is 40pc dislocated, they deem her too weak to operate on.
“In the past two years she has only had one four-week block of physio through Ireland’s health system, so it’s down to me to do it.”
Antoinette, who lives with her husband Pat and four children in Cork, said her youngest child has been suffering since she was diagnosed.
“We have been given excuses over the last 13 years. I don’t understand why nobody will do anything for her,” she said.
Antoinette contacted a hospital in Belfast to ask about cross-border treatment, but Katie was too young to be considered.
She more recently got in touch with the surgeon who operated on her in St Louis almost a decade ago. If treatment in the US is offered, the family will again need to raise funds for Katie to travel and undergo the necessary procedures.
“It’s not only Katie who is being neglected, children all over Ireland are suffering because of the lack of services,” Antoinette said.
She is involved with Families United for Service and Support, and said the group has “spent thousands on therapies and assessments for our children because of the lack of services through the HSE”.
“We shouldn’t have to take our children to the other side of the world to get badly needed care, these surgeries should be readily available,” she said.
“I am doing what I can to help my daughter. I would go to the ends of the earth and back again if it meant she wasn’t in pain.”
When contacted for comment, the HSE directed the query to Children’s Health Ireland (CHI). CHI said it does not comment on individual cases.
“When a patient or family makes personal information public, this does not relieve the hospital/CHI of its duty to preserve/uphold patient confidentiality at all times,” a spokesperson said.
“In relation to specific patients, we would encourage families to contact their clinical teams directly or reach out to our Patient Feedback and Support Service.”