Bealnamulla family issues appeal for Conor's life-saving surgery

An Athlone mother says she is not prepared to stand by and allow her wheelchair-bound son to die when life-saving surgery is available in Spain.

A GoFundMe page has been set up on Conor Burke's behalf to try and collect the estimated €160,000 cost of the specialised spinal fusion operation which the family hope could happen in Barcelona next summer. The appeal currently stands at €11,746.

A previous appeal in February raised money to allow Conor (22) go to London to access subspecialists and tests, including an upright MRI not available in Ireland, which, his mother Lisa Malone said, had given them a fuller picture of what's causing his ill-health.

Conor went from being a healthy young man, up to age of 17, to needing an ileostomy surgery on his colon, suffering chronic pain and needing self-catherisation as his bladder stopped working.

He was diagnosed with Postural orthostatic tachycardia syndrome or POTS, a condition that affects blood flow and can result in a rapid increase in heartbeat.

It was also discovered recently that Conor, who lives in Bealnamulla, has Craniocervical instability or CCI, along with AAI Atlanto-axial instability.

This is a condition that affects the bones in the upper spine or neck under the base of the skull, and brainstem compression.

“We're the last three years trying to put the jigsaw pieces (all of his symptoms) together. It was the upright MRI which is not available in Ireland that showed the damage to the neck and the spine,” explained his mother, Lisa, on Monday.

The family now have an overall diagnosis of Ehlers-Danlos syndromes or EDS, a group of rare inherited conditions that affect connective tissue and cause joint hypermobility, problems with bladder control, digestive problems, extreme fatigue, joint pain, heart issues among others.

Surgery is required to stop its progression and ultimately, to save Conor's life, according to Lisa, and that surgery is only available in Spain.

“From last March, Conor has deteriorated, he was standing and walking then. He now wears a neck collar, and if that comes off his head would fall forward and his chin would hit his chest. He needs the collar to keep upright.

“In April, the left leg started to go. It's constantly shaking. His mobility is gone,” explained Lisa, who added that he is now using a powerchair full time.

“He's totally unstable. He can stand for six seconds, holding onto a hospital bed, with physio. He has CCI, AAI and his brain stem is compressed. Ultimately, his spinal cord can snap at any time. If that does, he's dead.”

Everything Conor has had to date has been a fight, and this is another one, admitted Lisa, who stresses that what's proposed is a very serious operation requiring lengthy surgery.

It involves the complete fusion of the spine from the base of the skull to the top of the thoracic spine. The 22-year-old also needs another DMX scan and a traction test in Barcelona prior to going over for surgery.

That's because Dr Gilete, who would carry out the surgery, strongly suspects that along with the neck issues, he could have tethered cord in the lumbar and most likely would need fusion and surgery on the spinal cord in his lumbar spine.

“There is no financial help for this (operation). The HSE Treatment Abroad Scheme is fine if you need medical treatment (in a public hospital), they'll step in to pay for that, but they won't pay for this (surgery) because it is in a private hospital. It doesn't happen in a public hospital.

“He (Dr Gilete) is the only one in Europe that will touch EDS patients and he works in a private hospital. There's another man, Dr Henderson in Maryland in the US as well.

“I'm not prepared to stand by and allow my son to die. If I have to take on the HSE, I have no issue with that. People with other illnesses can get treatment in Ireland, why not for EDS sufferers?” she asked.

While they have met many fantastic doctors and local occupational therapy and physio staff have been excellent, she believes Ireland doesn't have the expertise, understanding or equipment to help EDS sufferers, and the only option then is to accept your lot or to go abroad.

If the expertise is not there, “why not step up the plate and financially aid those who have to go out of the State?” she asked angrily.

The operation in Barcelona will mean a 10-12 day stay in hospital for Conor, and afterwards he'll have to remain there for six to eight weeks for aftercare.

“It's his only chance – what's going on with his spine is degenerative – that means it will get worse. He has 80% brain stem disability, and if the cord (snaps), it cuts off everything to his organs, and he's gone,” she said.

While Dr Gilete is stressing there are no guarantees with the surgery that he will go back to the way he was, Lisa and Conor believe it's their only choice.

“Ultimately, the operation will stop further degeneration. We are also hoping for improvements too to his leg, bladder, bowel and POTs.”

“I wish I had €160,000 in my bank account but I don't, it's not there. I do feel we'll reach the target because it won't be for the want of trying on our side,” Lisa vowed, saying while Covid-19 has made it more difficult, she and others are trying to come with different ways to reach people.

“The way I look at it, there are around 5 million people in Ireland. If 160,000 of those people gave a euro each – that's Conor's lifesaving surgery there.”

While she believes that Conor has missed out on a lot in the last few years, Lisa wants to ensure that his future is better, and his childhood dream of getting to travel can come true.

“He deserves every chance at life the same as everyone else. I'll fight his corner but he's well able to fight his own corner too. How many people out there have no one to fight for them and they have to just accept their lot?” she wondered.

A final year student in TUD studying International Business and Languages, Conor is managing to keep up his studies online despite his many daily limitations and is fluent in French.

The eldest of four, Conor has three brothers Adam (19), Jordan (13) and Jamie (9). He also spends a lot of time learning about his condition and is grounded and intelligent, his proud mother told the Westmeath Independent.

She had a “massive thanks” for everyone who has supported Conor so far, saying it is not something a mother wants to do, asking for help so publicly. She singled out Stephen Kelly, formerly of TV's 'The Hardy Bucks', now 'Three Bucks Left' for special mention. He's doing a fundraising marathon on January 8, in aid of Conor's appeal.

Though looking forward to a better 2022, Lisa was scathing about the lack of government help for EDS sufferers and the burden put on families.

“I hope it's a better year for everyone. There are a lot of people who have to raise money for a medical need, and our government has failed these people and they continue to fail EDS patients,” she ends.

You can support Conor's journey by donating on the Go Fund Me website here.