Elaine Morrissey is 37 years of age and should be enjoying a lovely period of her life with her partner Ian (Tyrell) and her two children Jordan and Ruby. But Elaine, who hails from Ballymun and moved to Roscommon 25 years ago has Ehlers-Danlos syndromes – EDS.
This entails a group of rare inherited conditions that affect connective tissue which provide support in skin, tendons, ligaments, blood vessels, internal organs and bones.
“EDS is a cruel, painful and in some cases, life-threatening genetic connective tissue disorder,” said Leanne Hill, a close friend of Elaine, photographed above.
“EDS has no cure,” added Leanne, “EDS is a thief that has stolen so much from my friend and her family.” And Leanne should know as she and her daughter now aged 14, also have the debilitating condition.
View https://youtu.be/m4r7Qy7vNck to see and hear what Elaine has had to experience, but note, viewers may find this very distressing.
Above Elaine and Ruby before EDS
Elaine notes even her teeth carry the EDS strain – the pain is unbearable, and shocking that anyone much less a child could experience this level of distress and pain on a daily basis.
Leanne and Elaine’s friendship grew when the pair met, Leanne and her daughter having completed surgery in the same clinic in Barcelona that provided Elaine’s operation.
“Both Elaine and her very precious 6-year-old daughter Ruby have EDS and both suffered unimaginably each day with countless symptoms including dislocations, subluxations, chronic pain, fatigue, vertigo, violent spasms, and chronic digestive problems such as Gastoparesis which caused Elaine to vomit blood daily.
Mother Elaine and daughter Ruby enjoying an ice cream treat!
During recent months, Elaine and Ruby received diagnoses of spinal instability including Atlanta Axial Instability (AAI) and Cranio Cevical 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 her spine. Both Elaine and her daughter have compressed jugular veins too. Elaine urgently needed spinal fusion surgery at the top of her spine at C0-C2 and also at C4-C5 and she also needed to have her jugular veins decompressed surgically,” said Leanne who has herself suffered so much of the conditions above.
There is no EDS care for Elaine and her daughter Ruby (above) where they live in Roscommon, despite Elaine and others campaigning for care for years now.
“EDS care is massively neglected,” stated Leanne who knows full well the impact of the disease. “People with EDS need specialist care, and the surgery that Elaine so badly needed was not available here under the national health system. This family had no choice but to appeal for help to pay for EDS care and for this life saving surgery with a private specialist in Barcelona, Spain.”
Hence, Leanne who is currently living in The Philippines with her family, set up a GoFundMe campaign for Elaine several years ago, to fund in advance for surgery and post-op care now. Elaine, claims Leanne, has given so much love and care to others throughout her life.
Post surgery, which entailed work on her spine from her C0 – her T6, Elaine is doing well and is now recovering at home In Ireland.
“Her spine and brain are now safe and stabilised by the fusion but she is still experiencing issues with nutrition/ abs feeding tube, and is awaiting help with that at home” said Leanne.
“Elaine has bravely cared for Ruby who has been sick since she was a baby, and for her family for years. She has pushed aside her own chronic illness, pain and horrendous symptoms. Her older son Jordan now assists in caring for both Ruby and Elaine. This amazing and incredibly brave family have gone through hell and daily battle through the unspeakable hell of EDS!”
Elaine’s recent surgery will not cure her EDS, says Leanne but it can alleviate the violent and debilitating spasms she experienced a daily basis, and relieve the pain in her head and spine, while stalling her further deterioration.
“We anticipated her surgery and after care costs were circa €80,000 but that may need to be updated as other issues arise.
“This surgery saved our lives, and gave us both a future!” said Leanne who called on readers of the Dublin Gazette to support.
“Please, please give this incredible Mum the same chance I was given. Even the smallest amount can make all the difference – as little or as much as you can afford.”
As mentioned earlier, Elaine’s daughter Ruby has many on-going health care needs re her EDS, you can follow Ruby’s journey on Facebook at “Ruby’s Journey”. It is hoped that she will be able to get to her teens before any intervention such as spinal surgery is needed.
Donations please to https://www.gofundme.com/f/8b87y-ruby039s-healthcare