Holywell’s Charity Golf Day to tee off for brave 4-year-old Myles’ life-threatening illness battle
A charity golf day is being held at Holywell Golf Club to support a brave 4-year-old local boy battling a life-threatening illness.
Myles Hughes from Holywell is just one of around 120 children in the world with a life-threatening condition so rare that doctors can’t predict what the future holds for him.
Myles was born with a rare genetic condition that is already affecting his development, mobility, hearing, and also his teeth.
His mum, Georgia, said that many children with this condition die between the ages of eight and ten. “More than anything, I would love to see him become a teenager. That would be my dream.”
Georgia was thrilled when Myles was born. A routine examination flagged that he had a ‘clunky’ hip, his feet turned in, and he had what the nurses thought was glue ear.
Georgia was told she’d receive follow-up appointments but was able to take Myles home.
“I didn’t think much about it all at the time because I just wanted to focus on my new little bundle of joy. He was like a tiny sparrow with his little hands and legs,” she remembers.
In the months that followed, Myles was diagnosed with severe hearing loss and fitted with tiny hearing aids, and he had an operation on his hip.
“During that time, I was terrified because of how quickly things were changing. I was taking Myles from one appointment to another, and I didn’t have the chance to process what was going on,” says Georgia.
“He needed another major operation on his hip at two years old. We stayed in the 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.
With the help of a crowdfunding page and generous donations from people who saw their story, she arranged to take Myles to Amsterdam for a consultation with a leading child neurologist who is an expert in the condition.
“The doctor confirmed Myles had a severe form and did lots of neurological testing. There are only about 120 children worldwide with the condition, and every child is so different, so you don’t really know what the future holds.”
Holywell Golf Club’s “Daniel Inskip Memorial Golf Tournament 2023” is being held on Sunday, 13 August, when golfers of all levels will come together and enjoy a fantastic day of golf.
Situated on Brynford Common, Holywell is an inland links-type course that is a fair and sporting test for golfers of all abilities.
It’s one of the highest courses in Wales and, at 800 feet above sea level, offers invigorating air and unpredictable breezes!
Proceeds from the event will help provide essential care for Myles.
Format: Teams of four players.
Cost: £20.00 per person or £80 for a team of four.
Contact Danny on 01352 711256 for tee times.
Check live fuel prices near you before you set off.
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