Team McClean

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 !!

[Team McClean @team_mcclean]

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

[Team McClean @team_mcclean]

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 ❤️

https://t.co/NXvoQrtiWz

[Team McClean @team_mcclean]

Ethan’s take on our new signing in Belfast 🫣😆🤣🤣🤣

[Team McClean @team_mcclean]

Picnic Lunch with Ethan and a view = just absolutely perfect ❤️

[Team McClean @team_mcclean]

❤️🥰 #duchennewarrior

[Team McClean @team_mcclean]

Who is this gorgeous handsome boy 🥰🥹

#duchennewarrior

[Team McClean @team_mcclean]

Ethan’s excited for the Belfast Redbull Soapbox today 😁

[Team McClean @team_mcclean]

When Ethan gets offered a race but refuses then tells us afterwards he didn’t want to leave them sitting 🤣🤣

[Team McClean @team_mcclean]

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 ❤️

[Team McClean @team_mcclean]

Ready for another day down at the beautiful North Coast and the North West 200 😁🏁 🏍️

[Team McClean @team_mcclean]

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 £30 for child size and £35 for adult with £5 from every jersey sold going towards Ethan’s bucket list 🫶🏻 link below for purchasing.

https://t.co/NXvoQrtiWz

[Team McClean @team_mcclean]

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 ?

https://t.co/NXvoQrtiWz

[Team McClean @team_mcclean]

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

[Team McClean @team_mcclean]

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

[Team McClean @team_mcclean]

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 !!

https://t.co/NXvoQrtiWz

#superhero #duchennewarrior

[Team McClean @team_mcclean]

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.

[Team McClean @team_mcclean]

Today I’m off to the hospital with Ethan to have his bloods done, this is not an easy appointment as Ethan knows how hard he is to get blood from, it normally means being pricked repeatedly till they find a vein 🫣

After his recent spell in hospital where his Troponin levels where a little high and his heart medications where stopped, these bloods are to check how his heart is coping now that he is back on heart medications.

Also they are to check his haemoglobin levels which were absolutely rock bottom when he was admitted and he’s been on iron tablets since.

Hoping for a good outcome today, after all the sun in out and he’s smiling🤞🏻

[Team McClean @team_mcclean]

Is it actually love between Lighting Jack and Belfast Giants Finnula or was it just a POFW fling ??

[Team McClean @team_mcclean]

@louisemorgan999 You should have come said hi - wouldn’t have been crazy at all 😁

[Team McClean @team_mcclean]

Ethan laughed, he talked non stop, he gave his favourite ref pal grief, he handed out free stickers of his handsome face, he seen all his mascot pals and had the best hugs and cuddles from them and laughed until his sides hurt at them winding up his dad, he showed off his cool sign, he done a full interview with Stars TV live………

Playoffs was exhausting but so much more relaxing when the stress of his team not being there wasn’t involved.

We all loved seeing, talking to and just being among some of the best people this weekend - roll on playoffs 2027 and Ethan being Legal to drink.

Memories are the loveliest things,
they last from day to day,
they can’t get lost,
they don’t wear out,
and can’t be given away

Thank you to every single person that shared in any way in our playoffs weekend 🫶🏻❤️

#duchennewarrior