Campaign to fund specialist surgery for Athlone mother

Friends set up a fundraiser for Ehlers Danlos Syndrome (EDS) sufferers Leanne Hill and her daughter Esther to enable both of them to have spinal fusion surgery in Barcelona last year which has changed their lives for the better. Now, she wants to do the same for her “strong, incredible friend” - Athlone's Elaine Morrissey, and she has set up a 'Saving Elaine' GoFundMe page in a bid to raise over €80,000 needed to allow her to have the specialist surgery in Spain, the only centre in Europe where it's available.

“I just want to do anything I can to help her,” Leanne explains movingly, saying as Elaines's condition deteriorates the situation is becoming more urgent.

While the pair initially got in contact online, Leanne and Elaine have much in common and a shared bond of the rare, painful and sometimes life-threatening Ehlers Danlos syndrome (EDS), a complex group of disorders that weaken the connective tissues of the body and has no cure.

Both mothers and their daughters have the rare condition and there was a shared understanding of what that meant – the countless painful symptoms, the worry, fear, the fight to be taken seriously, and the battle to get vital medical help.

“My heart went out to her because I hadn't met anyone like me. I could reassure her,” Leanne details, saying she and Elaine quickly became firm friends, in touch regularly by phone or message. They met for the first time last September in Barcelona when Elaine was examined and approved as a candidate for spinal surgery, and they really clicked as if they had known each other for years.

“Elaine and I could really relate to each other because neither of us knew anyone else in that situation,” she tells the Westmeath Independent.

Elaine Morrissey has come to local and national prominence in recent years by petitioning former Taoiseach Leo Varadkar on a visit to the town and former Minister for Health Simon Harris in a fight to get medical care for her daughter Ruby (6).

In January last year, she accepted there was no medical help for Ruby in her home country, and she fundraised to travel to England in a bid to improve her beloved daughter's health, documenting her story on the heart-rending Ruby's Journey Facebook page.

In the meantime, poignantly, the 37-year-old has another major battle on her hands after being diagnosed with EDS herself in December 2019. Her condition has worsened quickly since leaving her vomiting blood, in constant pain with major difficulties walking, talking and suffering multiple dislocations, involuntary tremors and jerky movements among her many symptoms.

“The only answer for Elaine is the surgery,” Leanne believes, saying “it will give her back her quality of life because at present she has none.”

At the same time, she is in awe of how much pain she pushes through to still care for Ruby, with the help of her son Jordan, and her family.

While there is no cure, the surgery can make a major difference to the symptoms allowing recipients to live a more normal life

Leanne says Elaine and Ruby deserve “the world of help” because they have been through so much already.

“EDS is a thief that has stolen so much from my friend and her family,” she touchingly says on the GoFundMe page which at the time of going to press has donations of €1,465.

“Both Elaine and her very precious six-year-old daughter Ruby have EDS and both suffer unimaginably each day with countless symptoms including dislocations, subluxations, chronic pain, fatigue, vertigo, violent spasms, and chronic digestive problems such as gastroparesis which causes Elaine to vomit blood daily.

“Elaine and Ruby have received diagnoses of spinal instability including Atlanto Axial Instability (AAI) and Cranio Cervical Instability (CCI)

“This, in short, means that a person’s skull is very dangerously unstable on the top of their spines and in Elaine's case, there is also instability further down in her spine also.

“Both Elaine and her daughter have compressed jugular veins too.

"Elaine urgently needs spinal fusion surgery at the top of her spine at C0-C2 and also at C4-C5 and she also needs to have her jugular veins decompressed surgically,” explains Leanne.

Any donation – small or large – will make a difference to the campaign, she stresses.

“If everyone could give what they can, it could give so much. It means the world. Your heart does a little leap and you really feel the love and hope,” Leanne says, describing the feeling when a donation comes in.

Feeling so blessed that she and Esther were able to have the life-changing surgery, her big hope now is to be able to give that to Elaine too.

To support the campaign, https://www.gofundme.com/f/9zaf8a-saving-elaine