Anonymous donors give €120k boost to Conor’s Journey fund

An Athlone mother has hailed a “mindblowing” €100,000 donation to her son's fundraising appeal, saying that it means he can have two vital surgeries in Spain that will give him “a chance at survival” and “a chance at living”.

Lisa Malone described the donor, who wants to remain anonymous, as Conor's “earth angel” after he followed his story and contacted her last week to make the incredible gesture and give them great hope..

“He's Conor's earth angel, there's not many who would part with that amount of money even if they had it. He said to me 'Lisa, it's only money' but for Conor this is going to make a big difference,” the Bealnamulla resident told the Westmeath Independent on Monday, admitting she is still in shock by what has happened and is just so thankful.

Following the interview, it emerged on Wednesday that another anonymous donor had donated €20,000 to the appeal.

A message on the Conor's Journey Facebook page said in common with the first donation, the gentleman preferred to directly deposit into Conor's account rather than the GoFundMe due to the percentage of the money that would be lost in fees.

"We are eternally grateful for his help and will respect his anonymity. To have some financial cushioning as we go forward is such a relief of pressure on us as a family and will allow us to concentrate and assist Conor in his recovery," the post on Wednesday in relation to the €20,000 donation pointed out.

A GoFundMe page, Conor’s Journey, was set up on Conor Burke's behalf last year in a bid to collect the over €160,000 cost of a specialised spinal fusion operation in Barcelona. The 22-year-old has 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 and heart issues.

Unfortunately, following tests earlier this year with the world's leading specialist on the condition, it was discovered that he would need another operation before the spinal fusion because his spinal cord is tethered meaning the base of the cord is stuck to one of the vertebrae. This will happen in Barcelona on June 10.

Although the nerves are kicking in for Conor and herself, Lisa admitted that there is big relief too, that she doesn't need to face trying to raise another €100,000 for the second surgery when she gets back. The GoFundMe had raised over €65,000 which is just enough for the first surgery, but the donations has taken the pressure off everything.

“I can relax and be a Mammy to the rest of them (her children),” she said, pointing out that she was constantly preoccupied with fundraising up to now, and taking care of Conor, whose condition has deteriorated in recent months as his neck is dropping further, even though he is wearing a collar.

“That's such a huge thing he's after doing, not just for Conor, but for all of us. The pressure is gone. It's mindblowing really, it still hasn't registered even though the money is in there,” explained Lisa, who paid tribute both to the people of Athlone who have also supported them 100% along this journey helping them raise the funds needed for the first operation and the tests beforehand as well as to her tower of strength, her husband Pat.

Although hoping for an improvement in Conor's quality of life, Lisa underlined that there are no guarantees, but these operations will give him the best chance. In Ireland, his only option now is pain management and that is not something she or her family will accept for Conor.

“I'm praying these two surgeries go okay and he's okay after them. I'm hoping for the best outcomes, sometimes they happen, sometimes they don't,” continued Lisa, who explained that some people regain mobility and control of their bladder and bowel after the operations but there are huge risks too. Neither of the operations are covered in the HSE Treatment Abroad Scheme because the top neurosurgeon Dr Gilete, 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 is in fourth year of his International Business and Languages degree course at TU Dublin, has Craniocervical instability or CCI, along with AAI Atlanto-axial instability and that later again, EDS.

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

Before they head to Spain on Sunday week, Lisa appealed to anyone who believes to keep Conor, who is completely confined to a wheelchair and suffering a lot of pain, in their prayers.

“Next week is huge and high risk. We are just hoping and praying things go well,” she said, paying tribute again to the anonymous donor who has lifted a huge burden off them as a family.