A HAMPSHIRE mother is becoming increasingly desperate as a fundraising campaign to pay for potentially life-saving surgery for her daughter has stalled at less than ten percent of the total needed.

Jo Rolfe and her daughter, Jemma Lewry launched the fundraiser last year to raise £80,000.

But so far they have raised just over £7,000, and the clock is ticking on Jemma's condition.

Jemma has Ehlers-Sanlos Syndrome (EDS), a rare inherited condition that affect connective tissue.

The 23-year-old suffers crippling migraines, exhaustion and can only sit up for minutes at a time due to the searing pain in her head and neck.

And her condition is deteriorating.

Now her family is in a race against time to raise the money, as they have been warned that her condition could leave her paralysed and could even be fatal.

Jemma is suffering from a chiari malformation, which means brain tissue extends into her spinal canal, putting pressure on the brain stem and spinal cord and obstructing the flow of fluid around her brain.

Her family has struggled to get the answers they want to all of Jemma's symptoms or a clear treatment pathway via the NHS, and has paid for private scans with specialists in EDS, and seen an expert who deals with chiari malformation in Barcelona.

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There they were told that Jemma's neck is unstable down to between her shoulder blades, and that she needs surgery to fuse her neck as soon as possible before she deteriorates further.

They were also given the chilling news that if Jemma's brain stem became caught when her neck dislocates, which is does frequently, it could be fatal.

"We need the money as soon as possible," says Jo Rolfe, who works in a care home near the family home in Holbury, so she can be on hand got Jemma if needed.

"The surgeon wanted to do the operation last October.

"We have lots of collecting pots out and we have some events coming up, including a fun day on February 2, a pub quiz and a fancy dress walk and there is an online fundraising page. We don't know what else to do.

"As a mum, it's so frustrating and heartbreaking to see. Jemma is in so much pain. She has so little quality of life."

Since the Echo last reported on Jemma, in August, her condition has worsened. She has developed an irregular heartbeat, which may be due to pressure on her brain stem, and a tremor in her hand has become more apparent.

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"If she doesn't get this done, it will be life threatening, but even if her condition just deteriorates, she will be paralysed from the neck down, and will need full-time carers for the rest of her life," says Jo.

"We can't get government funding for this operation, but what will that cost the tax payer? This operation changes lives. She might even be able get out and earn her own money.

"It's cruel to leave these girls like that."

"I know that they say there isn't enough evidence to prove that this surgery is worth doing, but if you look at it, there is a lot of evidence," adds Jemma.

"I know eight girls who have had it done and it's been successful. One had to have a second operation, but has been better since."

"People can't believe we have to fundraise for the surgery," adds Jo.

"I'm not knocking the NHS. I know it's struggling. We've been sat in corridors for hours. I know they do their best and work hard. If the funding was there from government, it wouldn't be an issue."

Right now, Jo and Jemma are just hoping that they can find a way to raise the money as soon as possible, before Jemma's condition becomes significantly worse.

"My husband is an electronics engineer and I work as a cook in a care home, so I can be close to Jemma. £80,000 is a lot of money for us, but that's what we need to raise."

* To make a donation, visit https://just4children.org/children-helped2018/jemmas-life-saving-neurosurgery. There will be a fundraising fun day on February 2, at Fawley British Legion Hall from 10am to 1pm.