Fight For Alfie

10/06/2026

Be one very happy boy in this house when he wakes this morning 🥊🥊

04/06/2026

A child with Duchenne Muscular Dystrophy may arrive at school looking okay 😢

But what many people don’t see is what it takes to get there 💔

The exhaustion. The pain. The anxiety about keeping up. The embarrassment of needing help and support. The pressure to look “OKAY.” The constant effort to try and fit in 😭

Duchenne Muscular Dystrophy is a rare, progressive muscle-wasting condition.
It is 100% fatal and currently has no cure 😭

School challenges are not always obvious.
Sometimes it’s:
• Fatigue that gets worse as the day goes on
• Difficulty concentrating when exhausted
• Steroid side effects affecting mood and behaviour
• Struggles to build or maintain friendships
• Isolation during sport or play
• Fear of standing out

Sometimes the child who seems frustrated, angry, or emotional is simply trying to get through the day in a body that is working against them 💔

Not every difficult moment is “bad behaviour.”
Sometimes it’s fear.
Sometimes it’s overwhelm.
Sometimes it’s the reality of a condition that affects every part of childhood and shortens their life 😭💔

This is why understanding matters.
Not pity. Not lower expectations.
Just awareness, compassion, and the right support 💚

Children with Duchenne are not always just bold. Not always difficult. Not “attention seeking.”

They are just children trying to do their best in an incredibly hard reality 💔😭

20/05/2026

We want to give the biggest, most heartfelt thank you to one of Alfie’s longest and most dedicated supporters, Barry Darcy 💚

Year after year, Barry shows up for Alfie without hesitation, always putting others before himself. This March, he once again took on his “March Madness” challenge, not for recognition, but out of pure kindness and determination to make a difference. And thanks to his incredible effort, compassion, and the generosity he inspires in others, Barry raised an unbelievable $10,000 FOR ALFIE 💚

This isn’t just a number, it’s support, hope, and opportunity. It will help with Alfie’s ongoing needs, his travel, and vital treatments. It gives us strength in this fight and reminds us that we are not alone 💚

Right now, Alfie at almost 14 is still able to play football, something he absolutely loves and moments like that mean everything to us. We are holding onto every second and doing everything we can to stop Duchenne from taking that joy, that freedom, and that LIFE away from him 🙏

Barry, your selflessness, your commitment, and your belief in Alfie truly mean more than we can ever put into words. You’re not just raising money, you’re helping us keep our little boy on his feet, giving him more time to do what he loves, and standing beside us in the hardest fight of our lives 🥰

From the bottom of our hearts, thank you for never giving up on Alfie. You are a huge part of this journey, and we are forever grateful 💚

17/05/2026

Alfie, drenched to the skin but buzzing with pure joy, celebrating as Armagh clinched their first Ulster title in 18 unforgettable years. Rain pouring, hearts racing, this is what it’s all about Moments like this, memories like these 🧡🤍

The kind that stay with you forever, now let's take the all Ireland Armagh 🇮🇪 🧡🤍

15/05/2026

Our super star, hopefully your smiling like this on Sunday 💚

This week's front page: The family of Newry schoolboy Alfie Pentony have said they are “overwhelmed with happiness and hope,” following news that the 13-year-old will have ongoing access to potentially life-changing medication.

08/05/2026

Today is an incredible day. After all of Alfie’s hard work, strength, determination, the tears, the battles, and the unwavering support from so many families fighting alongside us, NICE has finally approved givinostat for boys over 6 who are ambulant. We are absolutely overwhelmed with happiness and hope 💚

For Alfie to now have access to this treatment, alongside the opportunity to now go back and continue receiving treatments in America, means more than words can ever describe. Nearly ten years ago we took on Duchenne, and our incredible boy is still walking, still running, still kicking a football and proving every single day just how strong he is 🥊

Today feels bigger than just one victory, it feels like hope for the future. Hope for more treatments, more breakthroughs, more time, more memories, and more milestones for all our Duchenne warriors and their families. The future is looking brighter than ever, and we will never stop believing in what is still to come 🙏

Today though we are also thinking of the families with boys no longer walking, and especially those who have lost their ability while hospitals had been arguing over EAP’s and NICE having been dragging their heels leaving it to late for them 😡😥💔

Alfie Pentony, we are beyond proud of you. You inspire us every day with your courage, your fight, and your smile. Keep kicking Duchenne’s butt like the absolute superstar you are. Today is a very, very good day 💚💪⚽

02/04/2026

Last week, Alfie was given the most thoughtful and special gift. A lovely girl Deirdri Ann Mac Caraher who follows him and truly understands just how much he loves animals surprised him in the kindest way 🥰

Her dogs had a litter of puppies, and she chose to gift Alfie one, simply to bring a smile to his face, and that she did 🥰
We’re so incredibly grateful for such a genuine and heartfelt gesture, it really means more than words can say ❤️

Everyone, meet Miss Luna, the newest (and already very loved) member of our family… and yes, Alfie has completely and utterly spoiled her already 🐾 💚

24/03/2026

We all at Fight For Alfie our absolutely heartbroken to hear of the unexpected sudden passing of Shea Haughey. Our hearts go out to his mummy Claire McMahon and his Daddy David Mary McMahon Cathy Patterson and all of the Haughey and McMahon families at this incredibly sad and difficult time. You have always stood beside us and supported everything we have done over the years, and we will never forget that kindness and loyalty ❤️

It is impossible to find the right words for such a devastating loss, and we cannot begin to imagine the pain this family is enduring. Please know that you are all in our thoughts and prayers, today and in the days ahead.

Rest in peace, beautiful angel Shea. Gone far too soon, but never forgotten. 😞💔🙏

Forever 12 🤍

22/03/2026

This boyo is over in Newcastle to watch his team play in the Derby, prob the biggest one of there games he been too since the cup final last year, hoping for a positive result for him and for me picking him up at the airport later that he will have a big smile on his face🤞🤞🤞

04/03/2026

SORRY FOR LATE POST, WITH SO MUCH GOING ON.

For the past 9 years, since Alfie’s diagnosis, Adrian Patterson has taken on the New Year’s Dip for Alfie without hesitation. Year after year, he steps into that freezing water with one purpose, to help make sure Alfie can continue receiving the treatment that keeps him on his feet 💚

Because of Alfie’s rare mutation, he hasn’t been able to take part in any clinical trials. For the last 7 years, we’ve had no choice but to fund his treatment privately every four months. It’s not optional ? it’s essential. It’s what keeps our brave boy standing, fighting, and living his best life 💚

And once again this year, Adrian has gone above and beyond. He raised an incredible £1,057 to support Alfie’s ongoing treatment. But what Adrian gives goes far beyond money. From the very day of Alfie’s diagnosis, he stepped into this fight with us. He hasn’t just supported from the sidelines, he has stood shoulder to shoulder with Alfie every single day, fighting alongside him, doing everything he possibly can (and more, if he could) for our boy 💚

We will never, ever be able to thank Adrian enough. His loyalty, love, and determination mean more to us than words can truly express. We are beyond grateful, and so incredibly blessed, to have him as Alfie’s corner man🥊💚