Woman with Ehlers Danlos needs £130k to live to Christmas

A desperately ill woman whose brain is dropping out of her skull fears she won’t live to see Christmas this year if she doesn’t raise enough money for life-saving surgery.

Sarah Gearing, 40, from Rochford, Essex, suffers from Ehlers Danlos syndrome, which makes her body’s connective tissues collapse and has left her in constant pain.

She has a hind-brain herniation, which means that her brain has slipped 7mm out of place and is now preventing fluid from circulating between the brain and spine.

Surgeons have warned only a complicated operation will save her, but it means she needs to raise £130,000 to undergo the 10-hour procedure in Barcelona. 

She has now issued an urgent crowd-funding appeal to help her achieve the six-figure sum, as without out it, she doesn’t ‘have long left’.

Ms Gearing, who has been a full-time wheelchair user for 20 years, 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.

Sarah Gearing, 40, from Rochford, Essex, suffers from Ehlers Danlos syndrome, which makes her body’s connective tissues collapse

‘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.

‘Right now my brain is dropping out of my skull, crushing my brain-stem and spinal cord.’

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A handful of surgeons 

Ms Gearing has learned the only surgeons in the world able to perform this highly complex and dangerous operation are in Spain or the US.

As a result of her condition, she also suffers from chronic pain, mental and physical levels of incapacity, and joints so loose that her ribs dislocate when she sneezes. 

The surgery she needs involves a total neck fusion and procedures to put her brain back where it belongs and permanently relieve the compression on her spinal cord.

She has a hind-brain herniation, which means that her brain has slipped 7mm out of place and is now preventing fluid from circulating between the brain and spine

Surgeons have warned only a complicated operation will save her, but it means she needs to raise £130,000 (pictured: what her neck will look like after surgery)

It will involve surgeons cutting open the back of her skull and re-positioning the brain. It will be done in one sitting due to the strain placed on Ms Gearing’s body.

Thoughts on the surgery 

Ms Gearing said: ‘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.

‘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.’

She added: ‘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.

She has now issued an urgent crowd-funding appeal to help her achieve the six-figure sum, as without out it, she doesn’t ‘have long left’

Ms Gearing, who has been a full-time wheelchair user for 20 years, 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’

‘Spain and the US are the only countries in the world that offer this surgery to EDS patients.’

Disorientating symptoms 

WHAT IS EHLERS -DANLOS SYNDROME?

Ehlers-Danlos syndrome (EDS) is the name for a group of rare inherited conditions that affect the connective tissue.

Connective tissues provide support in skin, tendons, ligaments, blood vessels, internal organs and bones. 

Different types of EDS are caused by faults in certain genes that make connective tissue weaker.

Depending on the type of EDS, the faulty gene may have been inherited from one paren, or both.

Sometimes the faulty gene isn’t inherited, but occurs spontaneously.

EDS can affect people in different ways. For some the condition is relatively mild, while for others their symptoms can be disabling.

Some of the rare severe types can even be life-threatening.

Source: NHS Direct

Some of the common EDS symptoms that she suffers are gastric and digestion problems, chronic dislocation of joints, and seizures that leave her disorientated.

The money will go towards the surgery itself and the aftercare that she will need, while she recovers in a specially adapted apartment with round the clock carers.

Ms Gearing, who was officially diagnosed with EDS six years ago, currently uses a catheter and lives with full time carer, Sue Geere, and care dog Otto.

They help her with tasks like opening and closing doors, picking things up and alerting her to oncoming seizures.

Prior to her diagnosis in 2011, doctors noted various different symptoms but never pinpointed that she had EDS.

Ms Gearing said they only suggested it was EDS when her condition worsened a lot and they saw more well-known cases popping up in the media. 

Raising the funds 

Ms Gearing’s local community and church groups have raised over £55,000 for her, and she remains positive, despite having less than a month to double funds so far.

She said: ‘I am overwhelmed by the support from everyone, and Rochford Council. 

‘I’m really positive about this because I think the trip to Spain two weeks ago was a sign that I’ll be all right.

‘There’s just so many things I want to do, like supporting other EDS patients. I’m not finished will life just yet.’

To help Ms Gearing, who has released a heartbreaking video, donate here. 

Ms Gearing has learned the only surgeons in the world able to perform this highly complex and dangerous operation are in Spain or the US