Mother hails local support for 'Conor's Journey' fund

An Athlone mother has hailed the “absolutely fantastic support” from the local community for her ongoing fundraising to get her son Conor life-saving surgery.

A GoFundMe page, Conor’s Journey, was set up on Conor Burke's behalf last year to try and collect the estimated €160,000 cost of the specialised spinal fusion operation in Barcelona.

The fund now stands at €52,355, and is expected to grow following a successful walk/run in Bealnamulla at the weekend, a Flag Day in Golden Island on March 26 and an 80's Disco on Good Friday Night in the Athlone Springs Hotel.

In recent weeks, Conor, and his mother Lisa, travelled to Barcelona to meet with neurosurgeon Dr Gilete and have several days of tests.

“Unfortunately, he's probably a bit worse off than we first thought – his spinal cord is tethered. That means the base of the cord is stuck to one of the vertebrae.

“The fibres that hang from the base of the cord are all stuck together. That means they will have to open him up, it's quite a big surgery. That has to be done before he does the spinal fusion. The plan is for the surgery to happen in Barcelona on June 10. That will cost around €60,000,” Lisa explained, none of which is covered in the HSE Treatment Abroad Scheme because the top neurosurgeon, who is the only one in Europe who looks after EDS sufferers, works in a private hospital.

A healthy teenager up to 17, Conor went from that to needing an ileostomy surgery on his colon, suffering chronic pain and needing self-catheterisation 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 that Conor, who lives in Bealnamulla, has Craniocervical instability or CCI, along with AAI Atlanto-axial instability.

After several years of trying to piece the symptoms jigsaw together, they got 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.

“His jugular vein and vertebrae artery is also completely compressed on his left-hand side, this is what carried the blood to the brain. That's all to do with the cranial instability,” added Lisa, who said this leaves Conor in danger of having a stroke. “With the tethered cord (operation) Dr Gilete hopes after the first surgery that Conor may regain control of his bladder and bowel, and there is a possibility he might walk again. He has said to us to hope for the best but to expect the worst,” she said.

The surgery will mean a four-week stay in Barcelona, with ten to twelve days in hospital and then onto specialised aftercare. It will then be several months after that he will be allowed to have the second operation, the specialised spinal fusion surgery, which it's hoped will halt the degenerative effects.

“It's quite scary. There are huge risks involved, but he has no choice, he just has to roll with it,” Lisa said candidly, adding that even with the surgeries Conor will not have a normal life afterwards, he'll never be able to look up for instance, but they hope his quality of life will be much better.

“I'm alive but I'm not living,” added Conor, coming to the phone briefly, to explain more about the condition.

When asked why there are few options for EDS sufferers in Ireland, leaving sufferers having to travel abroad for treatment, Lisa said many medics try to use the argument that they don't have the medical evidence. However, she claimed there are plenty of studies in journals in the UK and Europe, and they need to learn more about the condition.

At the moment, Conor (22) has more bad days than good, suffering a lot of pain, and a real lack of sleep as a result and is confined to a wheelchair.

“It's going to be a long road to recovery for both surgeries, but he has the support and he'll get through it,” the determined Athlone mother told the Westmeath Independent.

“The only option in Ireland is pain management and that's not a viable option for a 22-year-old starting out in life,” she stated, thanking TU Dublin for their understanding as he tries to keep up his studies. He's currently in year four of International Business and Languages.