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.”
OTHER NEWS:
- LIVE: Day Seven of the Rebecca Steer murder trial
- Salop Road open after road traffic collision on Monday
- Shropshire care staff nicknamed resident with dementia ‘Mr Dunno’
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.
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.
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.
Want to stay up to date with all the latest stories from Oswestry and the surrounding area? Click here to sign up for our morning and daily email newsletters and click on the + for the ‘Morning Briefing’ and the 'Daily Catch-Up'.
“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
Comments: Our rules
We want our comments to be a lively and valuable part of our community - a place where readers can debate and engage with the most important local issues. The ability to comment on our stories is a privilege, not a right, however, and that privilege may be withdrawn if it is abused or misused.
Please report any comments that break our rules.
Read the rules here