Team McClean

Imagine being the young person who has to live on the other side of all that equipment. Imagine needing help to breathe. Having tubes and wires attached to your body. Being woken up for medications, treatments, alarms, and vital signs. Imagine being uncomfortable but unable to simply get up and move. Wanting to sleep without something touching your face. Wanting to go to the bathroom without needing assistance. Wanting just a little privacy. Imagine being a young person who has to understand things that most adults will never experience. We talk a lot about how hard it is to parent a medically complex young person. But I think sometimes we forget to talk about how hard it is to BE one. You don’t get to decide when you’ve had enough. You don’t get to take a break from your diagnosis. You can’t simply unplug everything because you’re overwhelmed, overstimulated, frustrated, or scared. And perhaps one of the hardest parts is that everyone around you knows these things are necessary. So you’re expected to cooperate. To hold still. To tolerate the discomfort. To understand why something that makes you miserable is also something your body needs. Think about how often we teach children about bodily autonomy. We tell them their bodies belong to them. That they have the right to say no when something makes them uncomfortable. That their feelings matter and their boundaries deserve to be respected. Now imagine being a young person who is repeatedly placed in situations where saying no isn’t always an option. Not because anyone wants to hurt you. Not because your feelings don’t matter. But because the very things that frighten you, overwhelm you, or cause you discomfort are sometimes the things keeping you alive. Imagine having to surrender control over your own body just to keep it functioning. We celebrate medically complex young people for being brave, strong, and resilient. And they absolutely are. But being brave doesn’t mean they aren’t scared. Being strong doesn’t mean they’re comfortable. And being accustomed to medical procedures doesn’t mean they’ve stopped being painful, frightening, or exhausting. These young people deserve more than praise for their strength. They deserve patience when they’re frustrated. Compassion when they’re overwhelmed. Choices wherever choices are possible. And the freedom to have moments when they don’t feel brave at all. Because they shouldn’t have to earn our compassion by handling the unimaginable with a smile. These young people aren’t just patients. They’re people who want to laugh, play, make their own decisions, and have a little control over their lives. Because underneath the monitors, masks, wires, and medical diagnoses is still a young person. A young person who wants to play. A young person who wants independence. A young person who wants to feel normal. A young person who deserves to have their youth protected, even when their health makes that difficult. The equipment in this picture might look overwhelming to you. Now imagine being the young person who doesn’t get to walk away from it. ❤️ #duchennewithasmile #teammcclean

Night 2 of the double header weekend at our second home at the Belfast Giants 🥰

🎄❤️ Team McClean Christmas Raffle Incoming! ❤️🎄 A little festive excitement is on its way! 🎅

I think someone in our house loved Halloween this year 🤣🤣 @andyr_mcclean can’t say you didn’t give us all a good giggle !!!

We are absolutely thrilled to share that National Brick events have joined Ethans Florida fundraiser. Nick, Neil and the whole team have been so welcoming to us since we first attended there event a couple of weekends ago in Coleraine where Ethan had a display of just some of his own LEGO collection. We’re looking forward to working with the guys, and also seeing them at there biggest annual event in Aberdeen. nationalbrickevents.co.uk/ev… pandjlive.com/events/nationa… gofund.me/5796ec32c

Should we share a little bit of news this evening ??

Halloween costume all finished and Ethan is so pleased with it 👍🏻👊🏻 it’s a grabber machine - just coz your in an electric wheelchair doesn’t mean you cant dress up #duchennewithasmile

💙🧱 WHAT A WEEKEND! 🧱💙 From a simple email to meeting more truly amazing people with a shared passion for one of Ethan’s loves. When you live with a terminal illness like Duchenne muscular dystrophy, alongside complex medical needs, even doing the things you love can come at a cost. Ethan had a brilliant but very busy weekend at the National Bricks event in conjunction with Coleraine Connect at the Coleraine leisure centre, sharing his love of Lego with so many people. Ethan loves sharing what he does, so the opportunity to show off his builds was amazing. But now that it’s all over, he’s absolutely exhausted! 🥱 Living with Duchenne means his body doesn’t cope with things the way other people’s bodies do. Even when he’s having a great time, enjoying himself and pushing through, the exhaustion eventually catches up with him. When he comes down from the “highs” of an event like this weekend he has to do what his body is telling him (and what doesn’t come naturally to him 😆😆) and that’s to rest up. 💔 Ethan loves events about his passions and would do anything to attend them. But despite being completely shattered, he’s so thankful for everyone who came over to his table to see his Lego, stopped for a chat, showed an interest and took the time to support him. ❤️ A HUGE thank you, and we really mean a HUGE thank you, must go to Nick, Neil and their Team at National Brick Events for being so welcoming to us to their first event in Northern Ireland and allowing us to operate a raffle at the event for Ethan’s bucket list. The raffle wouldn’t happen without the generosity of everyone who bought tickets for the raffle to help raise funds for Ethan’s bucket list. For this we are truly thankful. Every ticket purchased brings him one step closer to making more special memories and experiencing some of the things he’s always dreamed of. Your kindness and generosity mean the world to him and us. 💙 When you have a terminal illness, you learn that time is precious. You don’t know how many opportunities you’ll get to do the things you love, so every event, every memory and every person who takes the time to make you smile means so much. His body might be exhausted, but his heart is absolutely full tonight. 🥹💙 Thank you to everyone who made this weekend so special for him and us, Your support means more than you’ll ever know. Now it’s time to rest and recharge before his body reminds him just how much he’s done !😂💙 #TeamMcClean #DuchenneWithASmile #nationalbrickevents #coleraineconnect #LegoLove #MakingMemories

#Duchennewithasmile #duchennewarrior

2 more builds finished by Ethan. I have to say I think the Wallace and Gromit is my favourite of all his builds to date 😊 #duchennewithasmile #duchennewarrior #lego

What a way to start a week !!! We are absolutely thrilled to share with you all that Ethan will proudly be displaying some of his vast LEGO collection across 2 tables at this weekends National Brick events, Lego event in Coleraine. We look forward to seeing many of you there for what is sure to be a very fun weekend 😁

Looking good and so grown up before his big appointment today 🥰 #duchennewithasmile

Ethan had the best morning with the best team - thank you so much to the @belfastgiants and @largelaurs for having him down today for some 18th birthday celebrations. Ethan may have lost most of the power in his muscles since he first started supporting the Giants 10 years ago but one thing he will never lose is his love for this Team 💚 he also got the chance to present them with the LEGO picture he made for them x

❤️ FROM TWO VERY GRATEFUL PARENTS ❤️ Where do we even begin? The last week or more has completely overwhelmed us. Watching our son turn 18 is something we struggle to put into words. Because for parents of a child with Duchenne, a birthday is never just a birthday. Every year. Every candle. Every milestone. Every year we get to watch our boy grow older… We know how precious it is. There have been so many moments over the years when Duchenne has taken things from Ethan that no child should have to lose. But it has never taken his incredible spirit, his smile, his determination or his ability to touch the hearts of those around him. And then, for his 18th, you all showed him just how loved he is. ❤️ The dozens upon dozens of cards, the gifts, the messages, the videos, the birthday wishes, the people who travelled to be there, and everyone who made the effort to celebrate our boy… We have cried. We have laughed. We have been completely overwhelmed. Every card that came through our door meant something. Every message meant something. Every person who stood beside Ethan and celebrated this milestone with him meant something. Because behind every card, every gift and every message was something far more precious… Someone choosing to make Ethan’s life a little brighter. As his parents, we will never be able to thank you enough for that. We have spent 18 years fighting alongside our son, watching him face battles that no child should ever have to face. We have watched Duchenne change his life in ways we wish we could have protected him from. So to stand there and watch him surrounded by so much love on his 18th birthday was something we will carry in our hearts forever. You didn’t just celebrate a birthday. You celebrated Ethan. You celebrated 18 years of his life. You celebrated the fighter, the son, the boy we are so unbelievably proud to call ours. Thank you for giving our son memories that will stay with us forever. Because we know something that perhaps not everyone understands… When you live with Duchenne, you don’t take milestones for granted. You hold them tightly, because you know just how precious they are. On Monday, our boy turned 18. As his mum and dad, there is a part of us that wishes we could stop time right here. Freeze this moment. Keep him 18 forever. Because while everyone else sees a young man celebrating his 18th birthday, we see the little boy we brought home 18 years ago, and every battle he has fought to get here. We know the road ahead is one we cannot control. We know there are no guarantees about how many more birthdays we will be given together. And that is a pain no parent should ever have to carry. So this past week, we didn’t just celebrate 18 years. We held our son a little tighter. We looked at him a little longer. And we tried to etch every second into our hearts, because we know just how precious these moments are. Ethan, if one day you ever wonder just how loved you are, we hope you remember your 18th birthday and all the people who showed up for you. Because you are more than a diagnosis. More than Duchenne. More than the battles you have had to fight. You are our son. Our world. And for 18 years, you have taught us what strength, courage and unconditional love really look like. Thank you to every single person who helped us give him this milestone. We don’t know how many birthdays we will get to celebrate with our boy. But we know this one will live in our hearts forever. ❤️ 18 years of Ethan. 18 years of loving him. 18 years of fighting beside him. And one precious milestone we will thank God for every single day we were lucky enough to reach. ❤️ #duchennewithasmile #tilltheendoftheline #18th

TODAY IS THE DAY. ❤️ Today’s the day of our beautiful boy’s 18th birthday party. A birthday that, if we are completely honest, there were times we were terrified we would never get to see. For 18 years, Ethan has had to fight a battle he never chose. While other children were simply growing up, he was learning about hospitals, appointments, treatments, wheelchairs and the cruel reality of living with a terminal diagnosis. We have watched Duchenne take things from him that no child should ever have to lose. We have watched him grieve the life he should have had. And we have stood beside him, helplessly wishing we could take every bit of it away. But somehow, through every heartbreak, every setback and every fear about what is still to come… Ethan keeps going. He keeps smiling. He keeps fighting. He keeps showing us a strength that no 18-year-old should ever have needed to find. So today, we are asking one thing… SHOW UP FOR HIM. Come and celebrate him. Make him laugh. Dance with him. Hug him. Make noise. Fill the room with love and remind him that his life matters, that he matters, and that he is surrounded by people who are grateful he is here. Because today isn’t about Duchenne. It isn’t about what it has taken. Today is about the boy behind the diagnosis. Our son. Our Ethan. Our miracle. ❤️ We don’t know what the future holds. We don’t know how many more birthdays, milestones or precious moments we will be given together. So tonight, we will celebrate this one with everything we’ve got. Because one day, when all we have left are photographs, videos and memories… We want to be able to look back at this night and know that when Ethan needed the world to show up for him… WE DID. ❤️

Super excited for the surprise tomorrow night. We can’t wait to see Ethan’s little face when he hopefully see loads of friends and family standing there to help him celebrate 🥳 Remember it’s upstairs in the rugby and kids are allowed as it’s a private party !!

Happy 18th birthday to our beautiful boy. ❤️ I don’t think there are words big enough to describe how proud we are of you. You are, without a doubt, the strongest, toughest, most resilient and inspiring person we have ever known. You have had to fight battles that no child should ever have had to face, and somehow, through all the pain, the losses and the fear of what lies ahead, you still find a way to smile. As your parents, there have been so many moments when we have wanted to take it all away from you. We would give anything in this world to make your life easier, to give you back the things Duchenne has taken from you and to protect you from everything that is still to come. But we can’t. And that is the hardest thing we will ever have to live with. So today, instead of thinking about everything that has been taken from you, we want you to know that we see everything you ARE. We see your strength. We see your courage. We see your determination. We see the battles you fight that nobody else sees. And we see the most incredible young man who, despite everything, continues to make us proud every single day. Ethan, you are so much more than Duchenne. You are our son, our world, our heart, and one of the greatest privileges of our lives. 18 years ago, we held you in our arms and never imagined how fiercely we would one day have to fight for you. Today, we look at you and we are completely overwhelmed with pride, love and heartbreak all at once. Happy 18th birthday, our beautiful boy. Keep fighting. Keep smiling. Keep being YOU. We love you more than words will ever be able to say. ❤️ #happybirthday #duchennewithasmile #tilltheendoftheline

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