Elaine is 37 years old and she has Ehlers Danlos syndrome (EDS).
EDS is a cruel, painful and in some circumstances life threatening genetic connective tissue disorder.
EDS has no cure.
EDS is a thief that has stolen so much from my friend and her family
Both Elaine and her very precious 6 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 Gastoparesis which causes Elaine to vomit blood daily.
Recently Elaine and Ruby have received diagnoses of spinal instability including Atlanta Axial Instability (AAI) and Cranio Cevical Instability (CCI)
This in short this 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.
Elaine and her daughter Ruby receive no care for their EDS under the national health system where they live, despite Elaine and others campaigning for care for years now.
EDS care is massively neglected.
People with EDS need specialist care, and the surgery that Elaine so badly needs is not available at all for people with EDS under the national health system.
This family have 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.
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.
But now her symptoms are completely debilitating and she badly needs help.
Elaine's older son Jordan now assists her in caring for Ruby and for herself.
This amazing and incredibly brave family have fought through and daily fight through the unspeakable hell of EDS.
This surgery unfortunately can not cure EDS, but it can alleviate the violent and debilitating spasms that now plague her body daily, relieve the pain in her head and spine, and stop her from deteriorating further
Please help Elaine continue to live, her family needs her.
We are waiting for the final quote for Elaine's surgery but the costs in all will be around €80,000.
We will update this target if needed.
My heart felt appeal for Elaine's surgery comes from a friendship found in a similar journey...
Just a few months ago my little 11 year old daughter and myself who both also have EDS, had surgery with the very same incredible surgeon who will perform Elaine’s Surgery!
This surgery saved our lives, and gave us both a future!
Please please give this incredible Mum the same chance I have been given.
Even the smallest amount given by many individuals can make all the difference!
Please give what ever you are able, as often as you are able, to help Elaine have her urgently needed surgery, as soon as possible!
As I mentioned, Elaine’s wonderful little girl Ruby has many on going health care needs because of her EDS, and she will unfortunately at some time also need to have surgery.
I will link below to Ruby’s separate go fund me which is run by Elaine.
If you can, please give also to help her.
You can follow Ruby’s on going health care journey on Facebook at “Ruby’s Journey”
Thank you all so so much for helping me help my precious friend.
Please share this go fund me anywhere and everywhere you possibly can, please let everyone know what an amazing lady Elaine is, and how much she needs your help!
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