Tracy Barnes @tracybarnes4 - Twitter Profile

6 days ago

@team_mcclean Don’t ever be embarrassed about fighting for your son that’s what us mums (and dads) do every single day it’s just your fight is so much harder good luck with the bucket list and give Ethan a massive hug he’s an amazing young man 💙

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Team McClean

@team_mcclean

6 days ago

💙 I’ve struggled so much with whether to write this… 💙 Because if I’m completely honest, one of the hardest parts about asking for help again is the fear of what people might think. “Another fundraiser?” “Haven’t they done enough already?” “Why are they asking again?” And I understand. I really do. As a mum, I never imagined I’d have to ask people to help make memories for my child. I never imagined that something as simple as taking your son on a holiday, celebrating his birthday or giving him experiences he’d dreamt about would become something we’d have to fight so hard to make possible. But our circumstances aren’t normal. My son has Duchenne Muscular Dystrophy — a terminal condition that has taken so much from him and from the future he should have had. While other parents are planning their children’s futures, careers, weddings and grandchildren, we are painfully aware that our future isn’t guaranteed. We don’t know how many birthdays we will get. We don’t know how many Christmases. We don’t know how many holidays. We don’t know how much time we have left together. And that changes the way you look at everything. You learn very quickly that memories aren’t something you can put off until later. There is a dream that means the absolute world to my son. A bucket-list trip to Florida. 🌴☀️ To some people, it might just seem like a holiday. To us, it is so much more. It’s a chance to give him something to look forward to. Something to be excited about. Something to dream about. Something that isn’t hospital appointments, medications, machines and medical worries. It’s a chance to watch my son smile and know that, for a little while, he is just an ordinary young man living out a dream. And that is why, despite the worry about what people may think, I’m asking again. Not because we expect anyone to give. Not because we think anyone owes us anything. And certainly not because we take for granted the incredible support we’ve already received. We are asking because I’m his mum, and I will never stop trying to give my son the best life I possibly can. If I have to swallow my pride and ask for help, I’ll do it. If I have to hear “another fundraiser”, I’ll accept it. Because one day, when there are no more opportunities to make these memories, I don’t want to sit and wonder if I could have done more. I’d rather be embarrassed for asking than spend the rest of my life wishing I’d asked. 💙 If you can donate, thank you. 💙 If you can’t, please don’t feel guilty. 💙 If you can share this, that alone could help us enormously. Every £1, every share, every kind message and every person who helps us get one step closer to making his dream happen means more than you will ever know. We aren’t trying to buy our son a luxury. We’re trying to buy him a memory. A memory that, unlike so many things Duchenne has taken from him, nobody can ever take away. Because when you have a child with a terminal illness, you learn something no parent should ever have to learn: You don’t count the years anymore. You count the moments. And right now, we’re just trying to make as many beautiful ones as we possibly can. 💙 Thank you for understanding. Thank you for listening. And most importantly, thank you for loving our boy. ❤️ #DuchenneWithASmile #tilltheendoftheline https://t.co/FtHsAk4Us0

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Tracy Barnes

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