An inspirational Newry boy battling a severe muscle wasting disease was given the once-in-a-lifetime opportunity to not only meet his idol… but to perform on stage with him!
Twelve-year-old Alfie Pentony has over the last number of years been bravely campaigning alongside his parents – Jamie and Colleen – for access to medication for Duchenne Muscular Dystrophy (DMD).
Despite living with all the debilitating effects of the inherited muscle wasting disease Alfie proves time and time again that he won’t be slowed by the condition.
He’s an avid Newcastle FC supporter and regularly attends matches, when he can. In 2024 he also completed a ‘dog jog’ with his beloved pooch, Gizmo walking a mile a day – no matter the weather – to raise money to help those also effected by DMD.
Add that to his previous stunts of performing an indoor skydive and a white collar boxing a Marathon… he’s a formidable young man.
And now, Alfie has been rewarded with the incredible opportunity to not only meet, but perform on stage, with the one and only rock legend of KISS fame, Gene Simmons!
With the help of Mile Monsters Inc – a group of long distance motorcycle endurance riders who compete in crazy challenges and races to raise both awareness and money to fight DMD – he was jetted off to California to meet his idol.
On November 5, Alfie and his family took flight to the US with an “incredibly excited little boy” knowing that he would be meeting one of his “biggest heroes”.
Coincidentally, while there on November 7, Alfie’s family remembered a day forever etched into their hearts… the day he was diagnosed with the cruel disease nine years prior.
Said his mum via the Fight for Alfie Facebook page: “9 years today, fighting this cruel, cruel disease. WE HATE YOU, DUCHENNE.
“November 7th, 2016, a date forever etched into our hearts. The day our world stopped turning. The day we heard the words that shattered us into a million pieces.
“Nine years ago today, our beautiful, cheeky, fun-loving little boy, Alfie Pentony, just four-years-old , was diagnosed with Duchenne Muscular Dystrophy. A diagnosis no parent ever expects, no heart is ever ready for.”
And while it will always be a difficult day for the family, Colleen said proudly, “Duchenne, you don’t get to win.
“Because right now, our amazing boy is living his dream, in California, seeing sights he never thought he’d see. He even got to visit Franklin’s house from GTA5 (his absolute favourite), got to see some famous actors from Stranger things at their Premiere and the BEST is yet to come…”
And the best did come. On Sunday, Alfie took to the stage in front of thousands of KISS loving fans in what his mum could only describe as a “wow moment”.
Describing that forever memorable experience, Colleen said: “This kid didn’t just get to meet Gene Simmons, Tommy Thayer, and Eric Singer, he actually got to perform on stage with ‘The Demon’ himself!
“We watched as Gene stepped back and let him take the lead smiling down on him with pride, and the crowd thousands of strangers went absolutely wild! They were cheering wanting him back up on stage, singing along, and capturing memories that will last a lifetime.
“To say we’re proud of this kid is the biggest understatement ever. You are so special and amazing and just built different Alfie, you truly lived the dream with your idol.”
In a final word of thanks to the incredible group of people that made it all possible, she added: “Mile Monsters Inc., Brian Ridgway, Robert Osley Saunooke thank you for making this possible and all his other Monsters who made the trip to be here with him and to see how proud you all were of Alfie, you made this kid that happiest little boy on the planet, nothing could ever top this EVER!”
