Ethan McC is a 17yr old with the terminal illness Duchenne Muscular Dystrophy. He loves Ice hockey,fast cars/bikes, going fast. Life is short enjoy every day !!

Joined January 2016
2,380 Photos and videos
Thank you so much to those of you who took time out of your days to wish me a happy birthday yesterday, you guys rock !! šŸ«¶šŸ»ā¤ļø @AmieMcClean
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šŸ’šŸļøšŸŽļø Ethan's Victory Lap toĀ 18 šŸ’šŸļøšŸŽļø We're hoping to make Ethan's 18th birthday one he'll never forget, and we'd love your help. Ethan is turning 18 on the 14th September, a huge milestone for any young person. He loves ice hockey, motorbikes, and fast cars, and we're asking people from near and far to help him celebrate by sending him a birthday card. Ethan lives with Duchenne Muscular Dystrophy (which is a terminal illness), epilepsy, ADHD, and autism. A mix of complex conditions that has brought many challenges throughout his short life. Despite this, he continues to show incredible strength, courage, and determination every day. For his 18th birthday, our dream is to surprise him with cards, messages, and birthday wishes from as many people and places as possible. Whether it's a simple card, a note of encouragement, or a message about hockey, bikes, or cars, every single one will mean the world to him. šŸ’™ Please share this post and help us spread the word. Let's fill Ethan's 18th birthday with kindness, support, and unforgettable memories. #EthansVictoryLapTo18 #18ForEthan #BirthdayCardsForEthan #DuchenneMuscularDystrophy Address to send cards is 49 Dunfane Park Ballymena Co.Antrim Northern Ireland BT43 7AJ Also if anyone is interested Ethan has his own hockey jersey available for sale, shipping world wide at the following link shop.crosscheckclothing.co.u… with Ā£5 from every jersey sold going towards his bucket list fund. Thank you so so much in advance ā¤ļø
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First appointment into adult services for Ethan today and it’s probably one of the most important ones - respiratory. This is the department that keeps an eye on Ethan’s chest and breathing and monitors his ventilator at night time to make sure he’s getting enough oxygen. We’ve had to use them more and more recently because as Ethan gets older and his muscles waste his body can’t clear coughs and infections the same way as we can so they’ve become a vital link to help us keep his chest clear. #duchennewarrior #duchennefamily
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June is Duchenne awareness month. For nearly 16 years now we have done nothing but talk about Duchenne and the impact it has had and has on Ethan’s daily life. He has grown from a toddler that loved nothing more than to hop, skip and jump and get into mischief to now having lost almost all of his mobility from the neck down. He still gets into mischief and loves to cause nothing but laughs and giggles. He struggles to breathe at night without the use of machines to help him, but never once does he complain about how hard and tiresome his short life is being on him. We can’t think of a better time to support him and buy the jersey that he has helped design with his friends at Crosscheck Clothing. Five pounds from every jersey sold will be going towards Ethan’s bucket list so we can help him complete something else on his list ā¤ļø shop.crosscheckclothing.co.u…
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Ethan’s take on our new signing in Belfast šŸ«£šŸ˜†šŸ¤£šŸ¤£šŸ¤£
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Picnic Lunch withĀ Ethan andĀ aĀ view = just absolutely perfect ā¤ļø
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ā¤ļøšŸ„° #duchennewarrior
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Who is this gorgeous handsome boy 🄰🄹 #duchennewarrior
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Ethan’s excited forĀ theĀ Belfast Redbull Soapbox today 😁
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When Ethan gets offered a race but refuses then tells us afterwards he didn’t want to leave them sitting 🤣🤣
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Being a special needs parent is a full-time job nobody clocks in for you. No overtime. No days off. No guaranteed backup. No simple handbook. No easy system waiting to catch you. And as a Duchenne Muscular Dystrophy parent, I have learned that the system does not always work in our favor. Sometimes it feels like you are constantly trying to prove what should already be obvious. That your child needs support. That your family needs help. That equipment matters. That therapy matters. That respite matters. That paperwork matters. That dignity matters. That your child’s life is not a checklist, a denial letter, or a budget line. And somehow, while you are already caregiving, already exhausted, already watching every seizure sign, every breathing change, every pain cue, every therapy need, every appointment, every form, every appeal… you still have to keep pushing. Not because you are strong every day. Not because you are not tired. Not because you have endless energy. But because the question always comes back: If I do not fight for him, who will? That is the weight many special needs parents carry quietly. We are tired. We are stretched. We are overwhelmed. But love keeps showing up. Advocacy keeps showing up. The parent meter keeps showing up. And even on the days when we feel like we are barely holding it together, we are still doing sacred work. So to every special needs family struggling right now — especially those living inside complex care, rare disease, Duchenne Muscular Dystrophy, autism, disability systems, and constant paperwork etc — you are not alone. You are not lazy. You are not failing. You are carrying more than most people will ever see. And I see you ā¤ļø
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Ready for another day down at the beautiful North Coast and the North West 200 šŸ˜šŸ šŸļø
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49 jerseys sold so far !!! Ethan is so happy, but we want to see this figure go much higher for him !! When Ethan was first diagnosed we were given a life expectancy of mid to late teens, we are already well into those mid to late teens so we count every extra day with him as a gift. This jersey is his and our way of celebrating his strength, courage and determination of everything he has come through and gos through daily 18 years of hard fought battles as a child. It’s not easy to live a life knowing you could die at any given moment. His 18th birthday in September is a milestone in 2 ways, both good and bad with Duchenne, it’s an achievement in its self as some (including friends) never even survive to this age and then it’s also a curse in disguise, coz we know with every extra year we are blessed to have him with us its also another year closer to losing him to this awful disease. So come on buy his jersey and let’s blow him away when we do a massive meet up of how many people he has touched in his short little life 🄹 Just Ā£30 for child size and Ā£35 for adult with Ā£5 from every jersey sold going towards Ethan’s bucket list šŸ«¶šŸ» link below for purchasing. shop.crosscheckclothing.co.u…
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Ethan has one wish for his 18th birthday in September and that is to see as many as possible wearing his jersey. He is so proud of everything this jersey represents !! Have you grabbed yours to help him celebrate reaching this major milestone in his short life ? shop.crosscheckclothing.co.u…
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Im sharing a little video for awareness of how Duchenne takes away muscle power and exactly how high Ethan can currently lift his arms, as lately I’ve seen some adults and children staring when Ethan is being fed, then we’ve also had Comments like Oh he’s a big boy can he not feed himself. Or directly to Ethan your a big lad can you not feed yourself. Or Ohhh I suppose you only get fed healthy stuff now that you can’t feed yourself. These comments are deeply hurtful to both Ethan and ourselves. The answer is no Ethan can no longer really feed himself, he still tries now and again but the risk of him choking is high, but that does not stop him trying occasionally. And yes he still gets fed sweets etc but due to the muscle loss in his swallow we also have to be careful as to what sweets etc he eats. So next time you see someone having to be fed show a little compassion for what they might be dealing with. Ethan, as we’ve always known since his diagnosis with Duchenne Muscular Dystrophy was going to lose all power to do anything himself independently. Eventually even what you see in the video won’t be possible anymore 😢 #duchennewarrior
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Finally framed and finished (took a while) and all ready to go to a new home, and just in time to celebrate both his upcoming 10th season and his 18th birthday. Every piece of Lego he builds has not only love poured into it but muscle power and strength he will never get back 🄹 #lego #duchennewarrior
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As today is National Superhero day we can’t think of a better day to celebrate all that is Ethan. Having Duchenne is tough enough but also autism, ADHD, epilepsy and sleep apnea thrown in is a challenge, but a challenge this superhero rises to each and every day and never once complains. He’s lost all mobility in his legs and most now in his arms. His heart has stopped and we got him back, we know all too well one day soon we won’t be so lucky. Some people don’t believe in heroes, but they have yet to meet Ethan. He has one wish at the minute and that is to see as many people as possible in his jersey in time for his 18th birthday in September. We’re trying hard to make this a reality !! shop.crosscheckclothing.co.u… #superhero #duchennewarrior
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So the answer is no they couldn’t get a needle into him yesterday so they instead had to use a little finger prick/slicer it cuts a little tiny nick in his thumb and then they drip feed the vials. They got just enough for the tests they needed and the results are already back, his heart seems to be holding up to the meds again and his haemoglobin is still a little lower than it probably should be so we will touch base with his drs on Monday to see what the story is. Today we’re in the garden enjoying some much needed vitamin D and he’s reading through all the comments of those who have already purchased there Team McClean jerseys. Have you got yours ?? His 18th birthday will be a milestone, some with Duchenne never make it to this age.
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