🎗️ Imagine living one day at a time, where each moment is infinitely precious. This is daily life for Georgia and her son Myles, from Flintshire. At just six years old, Myles battles a rare genetic disorder, 4H leukodystrophy, with only five known cases in the UK.
Born deaf, Myles’ challenges emerged early on. It started with his teeth, didn’t recover after a fall, followed by alarming developmental delays. A devastating diagnosis soon revealed he would struggle with growth, balance, and walking – not to mention the life-threatening risks tied to his condition. For Myles, who remains ever the cheerful soul, life’s hurdles are steep. He requires hearing aids, glasses, and a helmet to protect him as his condition affects his balance.
But Georgia’s a fighter, confronting each uncertain day with love and courage. With no known cure, hope arrives in the form of Dr. Wolf, a specialist from Amsterdam. Georgia hopes another visit will provide guidance on maintaining Myles’ comfort as they fundraise for a chance to meet Dr. Wolf again.
Despite the odds, Myles shows remarkable resilience. Thanks to a charity grant, he’s about to enjoy a special birthday at West Midlands Safari Park, a chance for him to experience the joy of life’s wonders up close.
As Georgia works tirelessly for her son, she continues to make the most of their time together, cherishing every second. Let’s amplify their story, celebrating the everyday heroes and helping hands who make a difference.
Stay brave, little warrior Myles! 💙 #RareDisease #MylesJourney #HopeForMyles