Family rally to spread awareness about son's genetic disorder

The parents of a boy with a genetic disorder from Milton Keynes hopes that this year's annual Jeans For Genes day can help spread awareness about his rare syndrome.

Thursday, 22nd September 2016, 9:17 am
Updated Wednesday, 5th October 2016, 1:54 pm

Owain Wilks, seven, was born with a heart murmur, and at the time blood was taken to check Owain’s genetics.

Gemma Wilks, 36, was not concerned about her son’s heart defect when it was first diagnosed because husband Keith also has one.

However in a follow-up appointment when Owain was just four months old, the family were told he had Noonan’s Syndrome.

Mum Gemma, said: “I’d never heard of Noonan’s and not much information about it was avaliable at the time.”

It is common for Noonan’s children to struggle with feeding as they have a senisitive reflux.

By the time Owain was one, he weighed less than 7lbs - little more than his birthweight.

Owain was in and out of hospital throughout the first two years of his life and had a number of procedures, including one to treat his reflux and insert a feeding tube.

Gemma is devoted to becoming an expert on her son’s condition and is optimistic.

She said: “Owain gets pain in his joints and gets tired but overall his health is stable and he’s doing well at school.

“Keith and I will always support him.”

In tomorrow’s Jeans for Genes day, money is being raised to help young children like Owain who have genetic diseases.

For more information about the fundraising, visit: