BROTHERS with the same condition are raising awareness for children’s genetic disorders.

Darlington siblings 11-year-old Regan and six-year-old Jenson both have Vascular Ehlers-Danlos syndrome (vEDS), inherited from their father, Chris Airey.

The condition affects all tissues, arteries and internal organs, making them extremely fragile, and means one knock or bang can cause a dissection or a tear in an artery.

In July 2017, at the age of 39, Regan and Jenson's dad was diagnosed with vEDS.

After his diagnosis, Mr Airey and his wife, Elizabeth, decided to have their three sons tested only to discover the two youngest sons also had the disorder.

Their eldest son, Kieran, is unaffected by the condition.

“It was a real shock,” said Mr Airey, now 42, “It is such a serious and life-limiting disorder, it was so hard to come to terms with. It feels like a ticking time bomb. Any knock or bang can cause a dissection or a tear in an artery. The boys have to be so careful.”

Darlington and Stockton Times:

Mr Airey has an annual full body and head MRA to check for any aneurysms and takes medication to lower his blood pressure and heart rate.

At the moment, Regan and Jenson do not take medication however they too will have MRA scans when they reach 13.

The family has applied for a care plan for when Regan starts senior school in September which will prevent the boys from being involved in any contact sports such as football or rugby.

Mr Airey added: “We made the decision that it was better for us and the boys to know if they are positive, for their lifestyle. They can do PE but they have to avoid contact sports or weights, which can raise blood pressure, cause a rupture or dissection, all of a sudden. We had to get rid of the trampoline in the garden immediately, because you can’t bend a joint or have an impact.

"We drip fed the information through to the kids. We want them to live as unworried a life as they can. We don’t want them to be singled out, or wrap them in cotton wool, but we don’t want to put them in harm’s way either.

“The boys look completely normal, but they have some VEDS facial features – big eyes and a short pointy nose. They are both hypermobile, on a scale out of 1-9 they are an eight"

Regan and Jenson are this week raising awareness for the charity Genetic Disorder UK by taking part in Jeans for Genes Day which, from September 16 to September 20, invites people to wear their jeans to work or school in return for a donation.

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