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‘We lost years of their childhood’ says Leyland Mum of twins with rare genetic condition

Posted on - 27th July, 2022 - 7:00pm | Author - | Posted in - Charities, Health, Leyland, Preston News, South Ribble News
Noah and Freddie were diagnosed with a rare genetic neurological disorder called Periventricular nodular heterotopia aged five
Noah and Freddie were diagnosed with Periventricular nodular heterotopia at five years old

13-year-old twins Noah and Freddie Hart from Leyland have been granted their wish for Oculus VR headsets by the children’s charity Make-A-Wish UK, having been diagnosed with a rare genetic neurological condition aged five.

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Gemma Hart, mother to Noah and Freddie, said: “We first noticed something was wrong when Noah had breathing issues at eight months old.

“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.”

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At five years old, the twins were diagnosed with a rare genetic neurological disorder called Periventricular nodular heterotopia (PVNH). The condition affects their hearts, lungs, digestive systems and mobility, making it difficult for them to join in with the games of other children their age. 

Noah and Freddie with their new Oculus VR headsets by the children’s charity Make-A-Wish UK
Noah and Freddie with their new Oculus VR headsets by the children’s charity Make-A-Wish UK

Gemma said: “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.”

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.

After Noah and Freddie’s wish to have matching Oculus VR headsets was granted by the charity, Gemma hopes it will begin a ‘new and exciting part of their childhood’.

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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 said: “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.”

To make a donation visit Make-A-Wish UK and help grant more wishes for children like Noah and Freddie.


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