Community helps devastated family after dad and daughter diagnosed with the same potentially fatal rare genetic disease

The Woodward family are raising money and awareness for Vascular Ehlers Danlos Syndrome, pictured from left are Dawn, Dave and Evie, eight
The Woodward family are raising money and awareness for Vascular Ehlers Danlos Syndrome, pictured from left are Dawn, Dave and Evie, eight
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A mum has told of the heartbreaking moment she discovered her husband and eight-year-old daughter had the same potentially fatal genetic disease.

Dawn Woodward was told her husband Dave had Vascular Ehlers Danlos Syndrome, a rare genetic disorder which could kill him at any time.

Then the family was devastated when their only daughter Evie was also diagnosed with the inherited disease - for which there is no treatment or cure.

In the three years since Dave’s diagnosis, the family has raised thousands during annual events for a charity supporting the disease.

A whole community has been moved by the day-today battle the family face and have rallied around to help them - and give as much support as possible.

Their latest annual fundraiser is a special Harry Potter party at Sutton Centre

Academy on Thursday, February 4.

Dawn Woodward was told her husband Dave had vascular Ehlers Danlos syndrome, a rare genetic disorder which could kill him at any time.

Then the family were left heartbroken after their only daughter Evie was also diagnosed with the inherited disease, for which there is no treatment or cure.

Dawn said: “We were devastated and Dave had to give up many things he enjoyed to lessen the risk of spontaneous rupture - the hardest thing was giving up golf.

“He wanted to lessen the risks to be there for Evie as long as he possibly could.”

VEDS is caused by an abnormal gene and, with no warning, major organs can rupture or burst, but, because of the fragility of the tissues, it is hard to repair them.

Dave who works for a Kirkby engineering firm, said: “I just get on with things - I still work full time and try not to over-exert myself.

“My dad died at 50 and my grandad at 29. They must have had VEDS without knowing it.”

The couple were told there was a 50 per cent chance Evie had inherited the faulty gene and opted to have her tested at Sheffield Children’s Hospital, where doctors confirmed their worst fears.

Dave said: “Evie is a feisty little redhead.

“She’s outgoing and bubbly and people think she’s lovely as soon as they meet her.

“When we took her to the clinic she was on the floor showing the geneticists how bendy she was and doing the splits.

“Unfortunately, that was exactly what they were looking for to help them make their diagnosis.”

Dawn said: “Dave and I really struggled with the news our beautiful daughter had inherited this invisible genetic disorder - we were inconsolable.

“We then had to take on the task of telling her she had special skin and had to be more careful not to lift heavy things,

“She had to give up dancing and gymnastics which she enjoyed so much, We put a care plan in place at Mapplewells Primary School and told her class about her special skin she handled it so well.”

The couple have since held annual fundraising events to raise awareness about the condition.

This year, a Harry Potter Party will be held at Sutton Community Academy on Thursday, February 4, at 5.30pm in aid of Annabelle’s Challenge for VEDS.

For information and tickets, email Charlotte.birch@suttonacademy.attrust.org.uk,or call 01623 405506.