Woman with rare condition must fly to Spain for surgery

Posted on - 28th April, 2017 - 7:00pm | Author - | Posted in - Charities, People, Preston News
Mandy has to wear a neck brace to help prevent dizzy spells
Mandy has to wear a neck brace to help prevent dizzy spells

A former youth worker from the outskirts of Preston needs your help to fight a rare genetic disorder.


Mandy Cooper, 30, was diagnosed with Ehlers-Danlos Syndrome in late 2014.

Her boyfriend, childhood sweetheart Matt Gray, is now caring for her and trying to raise £60,000 for treatment that can only be done in Spain.

Mandy’s condition is so rare there are so surgeons in the NHS who can treat her so she’s been forced to seek help elsewhere.

Matt said: “Mandy’s symptoms mean she is unable to stand for long periods and the ligaments in her neck leave her spine and skull unstable.

“She’s also developed a condition called POTS which means if she does move her blood pressure can change rapidly – causing her to collapse.”

The syndrome means her body is not producing collagen correctly.

Mandy had been working as a youth worker for a children’s centre in South Manchester where the couple live.

Read more: This Preston teenager named best in Britain

She had enjoyed an active job and lots of holidays with Matt and friends until the disorder developed.

Mandy during happier times
Mandy during happier times

“We went to London to get some upright MRI scans,” said Matt, “and we had to pay privately as the NHS wasn’t able to provide this.

“It discovered the changes in her ligaments in the neck and she now has to wear a brace to support her head.

“I continue to work full-time but it’s worrying leaving her at home each day.”

Friends and family of the couple, who grew up in Kirkham, have been rallying round and helping them to raise £60,000 for the specialist treatment in Spain.

Matt and Mandy
Matt and Mandy

A surgeon, with experience of other women with Ehlers-Danlos, can perform an operation to fuse some of Mandy’s vertabre together. This should make her head and neck more stable.

Matt said: “I’d like to thank everyone who has helped us so far.

“There’s so many fundraising events taking place and it is wonderful to see so many people wanting to help Mandy.

“It’s a very rare condition but I am hopeful the Spanish surgery will be able to make Mandy’s quality of life better.

“We have the surgery booked in for September.”

Read more: Campaign to help Preston businesswoman beat rare cancer

Events running in the Preston area include a Mad Hatter’s Tea Party. a big party and raffle and other friends are doing distance challenges for Mandy.

Anyone who wants to undertake a challenge for Mandy can do so via the Support Mandy website and donations can also be made there. You can also follow Mandy’s journey on Facebook.

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