THE mother of a four-year-old with a rare life-threatening condition that affects just 120 children worldwide, has helped launch and appeal to raise money for Hope House Children's Hospice.

Georgia Hughes, of Holywell in North Wales, and her son Myles, are featured in the Hope House and Tŷ Gobaith Children’s Hospices Summer Appeal, which has been mailed to 25,000 of the charity’s supporters across the region.

Myles was born with a rare genetic condition that is already having an effect on his development, mobility, hearing and also his teeth.

Georgia said: “So many children with this condition die between the ages of eight and 10 years old.

“More than anything I would love to see him become a teenager – that would be my dream.”

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Georgia was thrilled when Myles was born, but a routine examination flagged up that he had a ‘clunky’ hip, his feet turned in and he had what the nurses thought was glue ear.

Georgia was told she would be sent follow-up appointments but was able to take Myles home.

In the months that followed Myles was diagnosed with severe hearing loss and fitted with tiny hearing aids, and had an operation on his hip.

Border Counties Advertizer: Myles in the Hope House Ball PondMyles in the Hope House Ball Pond (Image: Hope House)

Georgia continued: “During that time I was terrified because of how quickly things were changing.

“He needed another major operation on his hip at two years old—we stayed in hospital for a week then he came home in a cast.

“I hired a special table so that he could sit upright and play, but I had to move his position all the time to keep him comfortable.”

Georgia began researching Myles’s symptoms online and became convinced he was showing signs of a condition called 4H Leukodystrophy.

So, with the help of a Crowdfunding page and generous donations from people who saw their story, she arranged to take him to Amsterdam for a consultation with a leading child neurologist who is an expert in the condition.

Border Counties Advertizer: Myles and Carer ChloeMyles and Carer Chloe (Image: Hope House)

The doctors there confirmed Myles had a severe form of the condition and they did loads of tests.

It was a paediatrician in the UK who first told Georgia about Hope House in Morda.

Georgia continued: “When they said it was a children’s hospice I just didn’t know what to expert – I thought it would be a place that children went to to die but it is so much more than that.

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“Hope House is a massive breath of fresh air for us both – it’s a place and people we can rely on.

“I know I won’t have to go through anything on my own because I can call Hope House and they are always there to help.

If you would like to support Myles’ Summer Appeal visit hopehouse.org.uk/myles-story