Leyland twins living with rare condition given presents to help them play like other children

The parents of Leyland twins living with a rare genetic neurological condition have have thanked a charity for its helping hand.

By Emma Downey
Wednesday, 13th July 2022, 3:45 pm

Noah and Freddie Hart, 13, have recently been granted a wish for Oculus VR headsets by children's charity Make-A-Wish.

Diagnosed at five with periventricular nodular heterotopia (PVNH) - a condition which affects their hearts, lungs, digestive systems and mobility, making it difficult for them to join in with the games of other children their age, mum Gemma says she is grateful to the charity for granting them their wish.

"We lost years of their childhood,” she said.

Leyland twins Freddie and Noah, 13, who live with a rare genetic neurological condition, with their new Oculus VR headsets courtesy of the Make-A-Wish charity

"Gaming has been a way for the boys to keep active while not exerting themselves. It gives them a level playing field with their peers.

"During lockdown, it was also a way of them feeling connected with their peers."

First noticing something was wrong when Noah had breathing issues at eight months old, Gemma added: "By two they had already been in and out of hospital most of their lives, but it took years to get a diagnosis.

"We felt like we lost the first few years of their childhood."

13-year-old twins Noah and Freddie

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Now 13, the twins continue to spend time in-and-out of hospital, with Noah likely to need heart surgery in the coming years. Research into PVNH is ongoing and the future is uncertain for the Hart family.

Gemma continued: "We can have a normal week, but then out of the blue something will happen, and it affects us all.

"But we appreciate things other people take for granted, like riding bikes and going to school, and these milestones are even more significant as they’re doing them at their own pace."

Noah and Freddie with their mum Gemma

Make-A-Wish UK has seen a 400 per cent increase in gaming wishes over recent years, with more children than ever finding solace in gaming whilst undergoing treatment for critical conditions.

Jason Suckley, Chief Executive at Make-A-Wish UK, said: "Last year, the gaming community came together to raise over £200,000 for the charity Make-A-Wish UK; enough to make 100 wishes come true for children like Noah and Freddie.

"With the public's help we’re going to raise £400,000, which will help us grant 200 wishes for 200 critically ill children."

If you would like to donate to Make-A-Wish CLICK HERE.