A mum battling an incurable disease will die if she doesn’t get specialised surgery in Barcelona, her distraught son has said.
Jordan Morrissey, 21, revealed the spinal fusion operation costs €100,000. He has so far raised nearly half that amount.
His mum Elaine suffers from Ehlers-Danlos syndrome, a rare genetic condition that weakens the body’s connective tissues such as tendons and ligaments.
READ MORE: Health officials warn of new Covid strain 'Omicron Spawn' as symptoms listed
The 37-year-old, who can’t take medication and needs a feeding tube, also suffers from chronic pain, fatigue, vertigo, violent spasms and digestive problems.
Heartbroken Jordan, from Athlone in Westmeath, fears his mum is “fading away” and does not have much longer left to live.
He told the Irish Mirror: “If my mam doesn’t get this surgery, she’s dead. She will die without it. I don’t have a timeframe but she wouldn’t have long left.
“She’s fighting, she’s fighting every day. She needs the surgery as soon as possible.
“She’s completely bed-bound, she screams in agony. She is constantly in and out of consciousness. Every move there is a risk to her life, one bump and she could die.
“At times I can speak to her but she can’t speak for long. I can speak to her for a couple of minutes before she loses her voice. It’s getting worse.
“She’s slowly fading away. She’s gone down to skin and bone after losing so much weight. She’s losing her teeth, her hair and her nails.”
He said while the surgery will dramatically improve his mum’s quality of life, she will never be free from all symptoms.
Jordan added: “Her voice box is damaged, she has a feeding tube at the minute. That’s how she survives.
“Even if she gets the surgery, she’ll still lose her voice and will need to be on the feeding tube but she won’t be bed-bound and she’ll be able to leave the house and things like that. She’ll get her life back.”
Jordan revealed his eight-year-old sister Ruby also suffers from EDS and that the condition has robbed her of a normal childhood.
He said: “My sister couldn’t kick a football without breaking a leg.
“When she goes to school, she’ll be able to go in one day and then she’ll need to take three days off because her body needs the recovery.”
Latest figures show there are around 500 people with Ehlers-Danlos syndromes in Ireland.
Jordan said: “It’s such a rare disease there’s nothing the doctors in this country can do for it because they’re not trained to deal with it.
“There isn’t enough help for the people who have it in this country.There needs to be more education.
“My mam is not getting treated for anything in Ireland. The amount of times she’s gone to hospital and she’s being told to go home because there’s nothing they can do.” Elaine suffered pain for years but was only officially diagnosed with the condition in 2020.
Jordan explained: “When my mam got pregnant with my sister, she got very, very ill. She was in a wheelchair and she was in and out of hospital, she couldn’t walk.
“She was in excruciating pain and the hospitals in Ireland literally tried to tell her she was crazy.
“The hospitals in Ireland don’t know anything about EDS but some doctor told her about the syndrome.
“She went and researched a lot about it and went to specialists and that’s how she got an idea about what was really going on.”
According to the NHS there is no specific treatment for EDS. It is possible to manage many of the symptoms with support and advice but spinal fusion surgery has been known to help in the past.
Jordan has been tirelessly fundraising for his mum’s treatment.
Last month, he walked from Athlone to Dublin with a pal.
He said: “My mam doesn’t have too long left and I had to do something. I did the walk at the end of September with my friend Isaac.
“It was very tough, particularly the first night when we had to sleep in a tent.
“The other two nights we were able to get accommodation but the walk itself was tough.The weather wasn’t the best. I sprained my ankle but I just had to get through it.
“We still need to raise a good bit of money. We’re about halfway there.
“It’s very mentally draining for me but I have to keep going for my mam and my little sister. I have to be strong for them.
“I’m just going to have to keep doing more, plan more things and hope to raise the money. I’ve been fundraising for more than two years.”
READ NEXT:
Mattress Mick goes viral after hilarious TikTok video and following still growing
Dublin businessman butchered by machete-wielding thugs in horror broad daylight attack
Met Eireann's grim weekend forecast with 'thunderstorms and hail' on the way
Irish woman to be extradited from South Africa to face charges in relation to double murder
Australian billboard ads aimed at poaching Irish nurses appear near Dublin hospitals
Get breaking news to your inbox by signing up to our newsletter
