❤️ HELP US MAKE ETHAN’S BIGGEST BUCKET LIST DREAM COME TRUE ✈️

Some dreams are about going on holiday. Some are about seeing the world. And some dreams mean so much more because you know that time is something you can never take for granted. ❤️

We are trying to make one of Ethan’s biggest bucket list dreams come true — to take him to Florida, somewhere he has LONGED to see for so long.

Ethan is 18 years old. A milestone we are so incredibly grateful to have reached, but one that comes with a heartbreak that is impossible to put into words.

Ethan lives with Duchenne Muscular Dystrophy.

Duchenne muscular dystrophy is a rare, progressive and terminal muscle wasting condition for which there is no cure. Alongside Duchenne, he also lives with epilepsy, sleep apnoea, ADHD and autism, all of which bring their own challenges to his everyday life.

We were supposed to go to Florida the year Covid struck. We never could have imagined how much life would change during that time. Covid took away our plans, but while the world stood still, Duchenne never did.

As time passed, Ethan lost the ability to walk. Something so many people take for granted was taken from him, and with it came another reminder of just how cruel this disease is..

Duchenne doesn’t wait. It doesn’t give you a break. It doesn’t care about the plans you have made, the places you long to see or the memories you desperately want to make. It continues to weaken the muscles throughout the body, including the heart, which is a muscle too. And heartbreakingly, Duchenne will ultimately take a person’s life.

As his parents there are no words to describe what it feels like to watch your child live with a terminal illness. You want to give them the world. You want to make every dream come true. You want to protect them from the pain, the losses and the cruel reality of what lies ahead, but there are so many things that are simply beyond your control.

One thing we can try to do, though, is make memories. Memories that will last a lifetime, even when time itself is something we cannot control. ❤️

And that is why getting Ethan to Florida means so much to us.

For some families, booking a holiday means choosing flights, packing suitcases and looking forward to an adventure. For our family, it means so much more. It means navigating complex medical needs, carefully planning every detail and making sure Ethan has the specialist equipment and support he needs to travel as safely and comfortably as possible.

It won’t be straightforward, and it certainly won’t be cheap. We will need to hire specialist medical equipment and cover the additional costs involved in travelling with Ethan’s complex conditions.

But we want to try. We want to give him this opportunity. We want him to experience Florida for himself, to see the places he has dreamed about, to smile, to feel the excitement of an adventure and to make memories that we will treasure forever.

Because Ethan deserves that. ❤️

He deserves to have dreams beyond hospital appointments, medication, medical equipment and the daily battles that come with his conditions. He deserves excitement, happiness and experiences that aren’t defined by Duchenne.

We cannot change his diagnosis. We cannot stop this cruel disease from progressing. We cannot give him back the time or the abilities it has already taken from him.

But we can fight to give him experiences. We can fight to make memories. And we can fight to make this dream happen while we still have the chance.

That is why we are organising a couple of fundraising events to help raise the money needed to make this trip possible, particularly to cover the specialist medical equipment hire and additional costs.

Every single donation, no matter how big or small, will help bring Ethan one step closer to Florida. And if you cannot donate, sharing this post could help it reach someone who can.

We know people are asked to support so many good causes, and we never take anyone’s kindness or generosity for granted. Every share, every donation and every bit of support means more to our family than words could ever explain.

As parents, we don’t know how much time we have, or what the future will bring. What we do know is that we don’t want to look back wishing we had tried harder to make this dream happen.

At 18, Ethan should have a world of adventures ahead of him. Duchenne has already taken so much, and we desperately want to give him the chance to experience as much of the world as possible.

We can’t promise Ethan a future free from Duchenne, but we want to give him a future filled with as many beautiful memories as we can.

Florida isn’t just a holiday for Ethan. It’s a dream. It’s something to look forward to. It’s something wonderful to work towards in a life that asks him to cope with far more than any young man should ever have to.

So, from the bottom of our hearts, we are asking for your help.

Please help us get Ethan to Florida. Please help us give him something incredible to look forward to. Please help us turn this dream into a reality and create memories that our family will hold onto forever. ❤️✈️

Because when you live with a condition like Duchenne, you learn that you cannot always wait for the perfect time. You have to make the most of the time you have.

And for Ethan, that time is precious. Every single moment matters. Every memory matters. And every dream is worth fighting for. ❤️

#TeamMcClean #EthanToFlorida #Duchennewithasmile #DuchenneMuscularDystrophy #BucketListDream #MakeMemories