A woman whose brain was dropping out of her skull has defied doctors’ expectations by living past Christmas after raising more than £140,000 for a life- saving operation.
Sarah Gearing, 40, feared she would die because of a genetic condition which causes her body’s connective tissues to collapse, meaning that many of her joints frequently fall apart.
But the Ehlers Danlos Syndrome sufferer is now recovering in a hospital two months after saying “my brain is dropping out of my skull” in a desperate fundraising appeal.
She said she never thought she would live past Christmas but is now recovering in a hospital in Barcelona, Spain, after having the “total neck fusion” brain surgery.
“I was sat up in my wheelchair for 45 minutes, then the next day I managed an hour. I am now off the IV nutrition line,” Sarah, from Rochford, Essex, said.
“In fact, my central line for all my IV treatments was taken out just before Christmas, so I am free from the tubes.
“I am still on antibiotics orally and still have the catheter in, but my recovery is all moving in the right direction now.
“I can’t wait to be back home, hopefully that will happen soon.”
Sarah has raised more than £140,000 since she made a fundraising appeal to have the risky operation in October.
Speaking at the time, she said: “My surgeon told me that my condition is more critical than it has ever been, and that if I don’t get the surgery I need by next month, I will die.
“Right now my brain is dropping out of my skull, crushing my brain-stem and spinal cord.
“This condition has affected every single aspect of my life, right now I wear a neck-brace all the time.
“When I was younger, my coordination was poor and I would bruise easily, since then things have only worsened.
“I had pursued a further education to become a counsellor but because of my health I couldn’t continue it. ”
Sarah had a hind-brain herniation, which meant that her brain has slipped 7mm out of place and was preventing fluid from circulating between the brain and spine.
Her condition also meant she suffers from her chronic pain, mental and physical levels of incapacity, and joints so loose that her ribs dislocate when she sneezes.
She said the only surgeons in the world able to perform the highly complex and dangerous operation were in Barcelona, Spain or in the USA.
She said: “The surgery I need involves a total neck fusion and procedures to put my brain back where it belongs and permanently relieve the compression on my spinal cord.
“The surgery will involve the surgeons cutting open the back of my skull and re-positioning the brain.
“I don’t understand the technical aspects of it, but it’s surgery that should be done over three sessions.
“They’re doing it all at once because the surgeon doesn’t think that my system can cope with being put through three separate operations.
“I’ve been a full-time wheelchair user for 20 years now- my condition has drastically worsened over the last two years though- right now, I’m in bed almost all day everyday.
“Sometimes, my skull slips away from the top of my spine and my head literally falls out of its place.”
Sarah is raising a further £70,000 for further surgery after contracting an infection which meant two of her bone grafts had to be removed.
Sara Millington, Sarah’s close friend who started the SurvivalSurgery4Sarah fundraising campaign, said: “Sarah has had a rough ride as her body has battled to recover from this major surgery and she has been battling an infection.
“She is just so grateful to be here, having been told she would not survive until Christmas, and she wants to thank God and everyone who has donated and fundraised, making it possible for her to have this life-saving surgery.
“We will be continuing to fundraise into next year as we intend to help Sarah get the final reinstatement surgery she needs.”
Some of the common EDS symptoms that Sarah suffers are gastric and digestion problems, chronic dislocation of joints, and pains and seizures that leave her disorientated.
She has lived in constant pain for the past 20 years but was only officially diagnosed with EDS six years ago.
Prior to this, doctors noted various different symptoms but never pinpointed that she had EDS.
Sarah said: “They only really suggested that it was EDS when my condition worsened a lot and more and more well-known EDS cases were popping up in the media.”
Sarah’s friend, Melanie Hartshorn, 28, suffered with EDS and caught the attention of the media when she completed her degree in Biology and attended her graduation ceremony while in a stretcher.
Sarah said: “The surgery I need involves a total neck fusion and procedures to put my brain back where it belongs and permanently relieve the compression on my spinal cord.
“The neurosurgeon said to me if I don’t have the surgery in November it’s unlikely I’ll make it to Christmas.
“He said that this is now a matter of urgency and that, top put it bluntly, without the surgery, I don’t have long left.
“Spain and the US are the only countries in the world that offer this surgery to EDS patients.”
To show your support and help her reach the £200,000 target now needed, go to justgiving.com/crowdfunding/survivalsurgery4sarah