The mum of a Dublin student with a rare disorder that could kill him is desperately appealing for urgent support to pay for his life-saving surgery.
Conor Burke, 22, who is originally from Athlone, was officially diagnosed with Ehlers Danlos Syndrome a year and a half ago.
Since then Conor's health has deteriorated to the point where he needs a wheelchair full-time and has to wear a hard neck collar to keep his head up.
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The TU Dublin final year student urgently needs two surgeries as doctors fear that his spinal cord could snap and kill him.
Conor told Dublin Live: "EDS affects my life in every way. I'm in pain a lot, especially down the spine. I also have to use a hard neck collar 24/7 apart from when I’m lying on my side.
"When I have the collar off me, my whole head slumps forward because I’m unable to support it and it results in the compression of the jugular veins and arteries."
Ehlers-Danlos syndromes (EDS) are a group of rare hereditary conditions that affect connective tissues.
Conor will have to travel to Barcelona in Spain to undergo two surgeries that could save his life.
"Getting the funds to cover the cost is hard.
"We asked the HSE if I didn’t go and seek the surgery in Spain, what would be their alternative. And all they said was, ‘pain management’ but I said to them, ‘you can’t even do that properly now’. "
Conor said that the surgeries will help "gain back some things that were taken away from me".
He added: "The hope is I’ll be able to walk short distances. And I might regain bladder control without the self-catheterise which would be God sent in itself."
Conor's mum, Lisa, said that while there's no cure for EDS, the surgeries will give him a chance at life.
Speaking lovingly about her oldest son, she added: "Out of the four of my boys, he knew what he wanted out of life. He’s a go-getter. He loved French, he loved travelling. That was his goal - studying International Business and Languages.
"Life has changed so much for him and it’s very hard as a mother to see that happen. Conor said to his doctors in Dublin, ‘I’m alive but I’m not living’. That sentence really stung me because it’s true."
Lisa has set up a GoFundMe page to help cover the cost of the surgeries. You can donate here to support Conor.
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