Samantha Smith, from Rochdale, now has less six weeks to raise £150k 'before it is too late' to pay for life-saving neurosurgery and the normally private mother has been forced to appeal for help from people the world over.
Samantha has been told that the complexity of her condition means that there are no surgeons who are able to operate here in the UK and her only option now is travel abroad to receive the surgery.
The 30-year-old was diagnosed with Ehlers-Danlos Syndrome (EDS) in December 2016 and a recent consultation at a Barcelona clinic revealed that she has developed potentially fatal complications associated with the illness.
EDS is a rare genetic condition that affects collagen meaning that the ‘glue’ that holds the body together is faulty and too weak, causing extreme widespread pain, daily dislocations, cardiac abnormalities and multiple other illnesses.
At her recent consultation Samantha received the devastating news that she had developed Crainocervical Instability (CCI) - where the ligaments in her neck have become too stretched and weakened to support her head, and Atlantoaxial instability (AAI) - where the top two vertebrae which hold her skull in place are unstable and dislocated meaning that she is at risk of internally decapitating every time she moves her head.
Samantha has started to lose consciousness regularly, vomit blood, experience extreme head pain, chest pain and weakness in her limbs.
And the mum has been told that if her conditions go untreated she faces a future of paralysis, organ failure and ultimately death.
Now Samantha is in a race against time to raise the funds to pay for her treatment which, she has been told, needs to take place at the latest by the first week in July.
She said: "CCI is slowly stripping me of my independence and normal functioning. I must dig deeper than I ever thought possible to manage day-to-day tasks;
The harsh reality is that if I don’t raise the funds for this surgery abroad then it will cause organ failure, paralysis and then it will take my life. The specialists can’t tell me how long this will take, only that time is of the essence and the longer we wait, the more damage will be done.
I am in constant pain in my neck, head and spine and week in, week out my neurological damage is becoming harder to ignore. My body goes into shock if I stand for more than a few minutes and I have tachycardia, tremors, and visual/hearing disturbances.
Over the past few months it's gotten a lot worse. I'm coping because I have the support of some great family and friends.
The operation would simply mean that my children get to have a mum - a mum they deserve."
Samantha's friend and fellow fundraiser Jemma Thorne said: "Please could everyone just donate a little something, even if its just a pound. We only have six weeks to get this money raised and to get Samantha her operation - if this isn't achieved by the first week in July then unfortunately it will be too late for Samatha to receive the life-saving operation she so desperately needs."
A leading EDS charity has highlighted the need for greater support for sufferers of CCI in the UK.
A spokesman for Ehlers-Danlos Support UK said: "There is not enough provision for Craniocervical Instability on the NHS and it is very difficult to access surgeons who will carry out the procedure. This has led to people looking abroad for the surgery as the alternative of not having it is unthinkable."
EDS is a rare genetic condition which is thought to affect 1 in 5,000 people across the world.
The #savesamantha appeal has already raised more than £48,000. To help Samantha Smith's fundraising appeal please visit this site.Anybody affected can contact Ehlers-Danlos Support UK via their website www.ehlers-danlos.org or through their freephone helpline 0800 9078518.