A Milton Keynes woman with a “wobbly head” that is not properly attached to her neck is hoping for life-saving surgery in America.
Nadine Turnbull, 38, has a rare condition called EDS that puts her at risk of internal decapitation because her skull is not properly supported.
WHAT IS EDS? A turn of ther head could prove fatal
It stands for Elhers Danlos Syndrome.
It affects the connective tissue in the body, giving joints hypermobility.
An added complication came after Nadine suffered a serious accident a few years ago. The accident, combined with the EDS, damaged the top two bones in her neck, rendering them unstable.
Officially known as Atlanto axial instability, it means the bones can almost dislocate when she turns her head.
Every time she turns her head, or jolts over a bump in a car, she risks paralysis or even death.
To make matters worse, the weight of Nadine’s skull is crushing her brain stem - the control centre for breathing, swallowing and heart rate.
The only neurosurgeon with the expertise to fix the condition lives in America - and the bone fusion operation would cost £110,000.
In a bid to raise the cash, Nadine’s partner Jamie Peters has launched a poignant crowdfunding appeal called ‘Nadine’s Fusion Fund - the Girl With The Wobbly Head’.
Jamie said: “Without the surgery Nadine’s condition will get worse and worse until she dies... The longer she goes without treatment, the more damage is being done to her brain stem.
“Time is running out for Nadine as the symptoms get worse every day.”
Nadine works as a hairdresser and though she may seem healthy to the outside world, she is reliant upon a cocktail of drugs to keep her alive.
On a good day she takes up to 10 different pills to improve her balance, regulate her heart, prevent seizures, regulate her heart rate and dull the constant pain she suffers.
On a bad day the pain in the back of her head and neck is so severe that she is immobilised in bed at her Hanslope home, drifting in and out of consciousness due to the agony.
“These attacks can be caused by the smallest thing - going over a speed bump or braking harder than normal, the rocking of a train carriage, or being accidentally knocked into on a busy street. They can also happen for no reason at all,” said Jamie.
“It is heartbreaking to watch such a strong person be stripped of her bubbly personality, her hopes and dreams, the reality of what her future holds sets in,” he added.
The £110,000 is needed to pay towards towards Nadine’s travel to the US, hospital and surgical fees and to support Nadine in her recovery.
“I can’t fix Nadine or solve this problem; neither can the surgeons in the UK so we have no option but to try to get to America to save her life. Nadine is a very private, proud, hard working girl who would rather go without before asking anything from anyone, but this is one battle we can’t do without your help.
“We need to raise £110,000 to fund the surgery in America and will be eternally grateful to anyone who is able to contribute to getting this life saving surgery, even if you can’t donate please take the time share her story so we can get her wobbly head fixed and her life back.
“All the funds raised will be used towards travel to the US, hospital and surgical fees and to support Nadine in her recovery.”
You can donate to Nadine’s fund via www.youcaring.com/nadineturnbull-1103904.
A Facebook page called ‘Nadine’s Fusion Fund’ has also been set up to raise awareness, while anybody with fundraising ideas can email firstname.lastname@example.org.