A MOTHER needs to raise £100K in two months for a critical operation which
will stop her sinking skull crushing her spine and leaving her paralysed.
Jessica Kill, 38, suffers from Ehlers-Danlos Syndrome – an incurable condition
which weakens the ligaments in her neck so much that she can no longer
support her own head.
The mother-of-two faces complete paralysis and is plagued with intense
headaches every day, facial numbness and slurred speech.
Her only hope is a complex and expensive brain procedure called Posterior
Fossa Decompression which is only available in the US.
The specialist treatment, which costs $150,000 and has a 95% success rate,
will take pressure off Jess’ brain stem and prevent her from losing the
ability to move her limbs.
Top surgeons have told her that she needs to have the life-changing surgery
before the end of July because her condition is deteriorating so rapidly.
Since launching a fundraising appeal a month ago, Jess has raised an
astonishing £50,000 through donations from more than 2,000 well-wishers.
Now the race is on for the project manager from Swindon, to raise the rest of
the cash for the operation.
Jess, who has to wear a neck brace to hold her head up, said: “If this
was my life now and there was nothing that could be done, I would accept it
– I’d have to.
“But something can be done, so I can’t be resigned to my fate. But it can
only be done in the US.”
Long-suffering Jess, who has two sons – Louis, 16, and eight-year-old Finley –
was born with Ehlers-Danlos Syndrome, but was only diagnosed in 2014
The genetic condition causes hyper-mobile joints, fragile blood vessels and
fragile skin which can rip easily.
Jess was recently dealt another devastating blow when she learned that her
youngest son Finley also has EDS.
She said: “There is no cure. I used to have this dream that someday I
would find this magic cure and find out what was really wrong with me and
that everything would be okay.
“I was proud of myself for coping with the illness as long as I could. I
was relieved and I thought it could be managed.”
Last Christmas Jess noticed she was developing pains in her head, pressure
around her ears and facial numbness.
The determined mum was diagnosed with Craniocervical instability (CCI), a
complication of EDS where the skull slowly crushes the neck, leading to pain
and eventual paralysis.
She said: “It sounds awful but when you have EDS you become quite blasé
about pain because you are in it all the time.
“My speech was slurring and my head hurt – they thought I’d had a stroke.
“I knew my symptoms were a sign of CCI, I just had a feeling the NHS were
wrong so my family paid for an MRI. I didn’t want to be right about CCI but
I was.”
She added: “It’s dramatically changed what I can do with my children.
“Before we would go on bike rides or for long walks and now I’ve become quite
a boring mummy.
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“If I don’t get this surgery, I will need help breathing, eating and have
to sleep with a machine. It is terrifying.
“I don’t know if it’s months or a year that I’ve got, but eventually I
will be left paralysed.
“Even though I was in chronic pain before, I had a quality of life which
I don’t have now. I can’t work so I don’t have my independence.
“It hurts to move – even with a plastic neck brace I can feel it. In the
past few months I have deteriorated rapidly and to a frightening point.”
And Jess confirmed the profound effects the vital operation will have on her
life.
She said: “Having this operation will mean I can be a mum to my children
again. It will mean I can have some independence and be the person I was
before.”
“I am so humbled and grateful for the support that has already been given
to me.
“I hate having to ask people for money but I can’t do this on my own.”
To help Jess and donate to her operation appeal
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