#duchenneawareness

Instagram photos and videos

#duchenneawareness#duchenne#musculardystrophy#buckybarnes#duchennemusculardystrophy#cureduchenne#endduchenne#dmd#avengersinfinitywar#rocketraccoon#ThanosDemandsYourSilence#pepperpotts#marvel#stanlee#nebula#ironman#hulk#groot#gamora#starlord#thor#blackpanther#avengememin#captainamerica#spiderman#avengers

Hashtags #duchenneawareness for Instagram

My bubble blowing champion 💦


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Every night before my children drift off we share this phrase. Ditto. ❤️ 🌓


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I seriously love grocery shopping, because I have an obsession with good food. 🤗Having this little man with me makes it even better 💚


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Good work Harrison 🐎


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My boys 💙 Harry couldn’t stand for long at 2yrs old but he could knee walk. This is how he took on the waves 🌊!


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I am continually learning. Some days I don’t get it right or things don’t go right but I learn.


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Something different for lunch. @sushibay


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Loving my new “green strength” necklace. Green is the awareness color for both Lyme Disease and Muscular Dystrophy. I do have that going for me 💚


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When you’re trying to understand a 5yr olds knock-knock joke 🤔


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My little cutie played Christopher Columbus in his sharing assembly 🤗 the whole of Elm class did so well! #christophercolumbus #sharingassembly #yearone #sixyearsold #schoolplay #explorer


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Hatching plans🤔


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Making me feel better


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It’s on like donkey kong


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Toddler Harry. Always then a crazy, happy, smiley guy. 😘


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It is sad but also it is true.


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We recently went on a day trip to Ipswich. They have a lovely mini zoo there. It was lovely there and the only downside was that it was hilly. More than what I remember. We counted all the lizards and ‘bin chickens’ (Ibis) and had an enjoyable afternoon.


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Strike a pose, there’s nothing to it 🤗


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Happy Tuesday guys!! My brothers bday is this Sunday!! Let’s keep reposting!!! DMD is a genetic disorder where muscles will progressively weaken. My brother has been a true warrior and has exceeded his life expectancy, so if anyone deserves to see this movie it would most definitely be him! He’s lived with it for 22 years and he’s turning 23 in May! He’s definitely MY super hero! ❤️❤️❤️ @avengers @therussobrothers @prattprattpratt @zoesaldana @davebautista @joshbrolin @danaigurira @chadwickboseman @karengillanofficial @letitiawright @tomholland2013 @michaelbjordan @pom.klementieff @robertdowneyjr @amctheatres @hardwick @nerdist @prodigy.v @imsebastianstan @twhiddleston @renner4real @therealstanlee @marvel_entertainment #avengememin #thanosdemandsyourhelp #avengersinfinitywar #ThanosDemandsYourSilence #duchennemusculardystrophy #thanksforyoursupport #avengers #spiderman #captainamerica #buckybarnes #blackpanther #thor #loki #starlord #rocketraccoon #groot #hulk #ironman #nebula #gamora #stanlee #marvel #duchenneawareness #pepperpotts #buckybarnes


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Is that what why 😞😴


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Riding Snip is very good for Harrison. Doing exercises like throwing a toy onto the barrel is providing him opportunities to stretch muscles in his torso and upper legs. It also happens to be very fun thanks to these lovely ladies.


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Join us for our 8th annual Expedition Mt Kinabalu for Duchenne awareness on July 21-23 in Borneo! Join an adventurous international team who are up to making a difference in the world! Take action and fly to Borneo to climb with us for one great adventure! #livelife #makeadifference #coalitionduchenne #expeditionmtkinabalu #summitofborneo #mtkinabalu #borneo #malaysia #duchenneawareness #livingwithduchenne #dustystrailsummitofborneo @sabahbah_ @kkcity @sabahtourism


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I would like to remember there were good times.


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My boys 💙


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It’s harder to go swimming now winter has pretty much set in.


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FYI


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He’s definitely lost his baby features. As his mum I do think he’s quite handsome though. Lol


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DONE! the end of a really tough weeks training , 85 MILES completed 😁🏃‍♂️👍☀️ all towards my challenge in September. 3 days rest now 😄. Thanks to Samathan Lawson and Adam Jackson for their help this week again. Both keeping me going along with the amazing support from #alexswish
#ultratraining #ultrarunninglife #ultrarunning #ultrarunner #charity #SGP #run4fun #runnersofinstagram #run #runner #althete #_uccs #Duchenne #duchenneawareness #musculardystrophy


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It was great seeing everyone at the @mda_massachusetts muscle walk yesterday at the Boston Common! Thank you to our friends at Wave Life Sciences, Sarepta Therapeutics and others for the great turnout!

#duchenneawareness #duchenne #dmd
#musculardystrophy #endduchenne #cureduchenne #caninecompanionsforindependence #sareptatherapuetics #wavelifeciences #mda #professionalfirefightersofma @shawssupermarket @mda_usa


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Living for now because Duchenne sucks.


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Summarised from DMD-guide.org


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Getting good at getting Snip to come to a stop ✋ 🐴


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Got a bit crafty today and made a little thing to get Zach excited about taking his steroids in the morning! He gets to peg up a number every day after he drinks it... and when we get to number 10 he gets a little “well done” prezzie! 🤗 (Also helps me keep track of what day we’re on!) also a big thank you to the ladies who got us on to the soluble steroid. It’s actually what our pharmacist ended up ordering in for Zach (not the liquid) and it’s going good 🙂 tastes much less “chemical” than his first prescription 💙 #10dayson #10daysoff #duchenne #duchennemusculardystrophy #duchenneawareness #duchenneheroes #duchenneuk #musculardystrophy #musclewasting #muscledisease #incentive #rewardchart #steroids #littlethings


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One day soon my son


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Good morning Big Sis ❤️


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Great news! Through our great sponsors, we’ve been able to cut conference ticket prices in half. With this, we hope to take the event as accessible as possible to all! Thank you Wave Life Sciences for your generous support with the conference.
https://tfmdeducationalseminar.eventbrite.com/

#duchenneawareness
#duchenne
#dmd
#musculardystrophy #endduchenne #cureduchenne


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Working on floating. Not a fan really. He just wants to splash 💦


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Summarised from DMD-guide.org


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It was breaking my heart every day watching Zach struggling into and out of class dragging his backpack behind him, once his lunchbox and books are in there it’s just too much for his little arms, but @joshbarber_c2 and I came up with a solution! We ordered this little backpack on wheels from Amazon and his little face lit up when he saw it! I was slightly worried about how his classmates would react, whether they’d say it was silly (kids can be mean!) but they were so sweet with him and his friends were asking if they could have a go at pulling it around 😁 he even insisted on pulling it most of the way up the hill back to our house today! (Although in the end I did end up carrying both him and the backpack!) it’s so lovely to see such a simple thing making a big and positive difference to Zach’s every day life 💙


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I’ve been feeling run down this week. A lot of people have told me they feel the same. That hamster in a wheel feeling where you busy and doing stuff but it doesn’t feel like much has changed.


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Happy Thursday guys!! Please please don’t forget to repost! His bday is coming up (May 27th) and being able to see the movie would be the most perfect gift!!! DMD is a genetic disorder where muscles will progressively weaken. My brother has been a true warrior and has exceeded his life expectancy, so if anyone deserves to see this movie it would most definitely be him! He’s lived with it for 22 years and he’s turning 23 in May! He’s definitely MY super hero! ❤️❤️❤️ @avengers @therussobrothers @prattprattpratt @zoesaldana @davebautista @joshbrolin @danaigurira @chadwickboseman @karengillanofficial @letitiawright @tomholland2013 @michaelbjordan @pom.klementieff @robertdowneyjr @amctheatres @hardwick @nerdist @prodigy.v @imsebastianstan @twhiddleston @renner4real @therealstanlee @marvel_entertainment #avengememin #thanosdemandsyourhelp #avengersinfinitywar #ThanosDemandsYourSilence #duchennemusculardystrophy #thanksforyoursupport #avengers #spiderman #captainamerica #buckybarnes #blackpanther #thor #loki #starlord #rocketraccoon #groot #hulk #ironman #nebula #gamora #stanlee #marvel #duchenneawareness #pepperpotts #buckybarnes


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Sleeping with the night splints on.


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Summarised from DMD-guide.org


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Dear families, we're incredibly excited to see you all in about 6 weeks for our DMD conference featuring great speakers such as Dr. Brenda Wong, Sarepta Therapeutics​, Pfizer​ and Capricor Therapeutics, Inc.​! For more info: https://www.terrysfoundationformd.org/event2

#dmd #duchenneawareness #duchenne #endduchenne #musculardystrophy #cureduchenne #duchenneawareness


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After school care surprised us with this height adjustable table that Harrison can use. In the afternoons when he is most tired he rests in his chair and now he can do a lot more activities now he can get to a desk while in his chair.


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Rocking those leg splints! (A pic I got sent home- thank you)


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Long post!
Update: We’re nearly 6 months post diagnosis so I thought I’d share with you guys just where we’re at with everything.
Firstly Zach still hasn’t started his steroids yet which I’m gutted about. He was prescribed tablets and he’d of had to take 6 a day (what 6 year old will do that?!) I tried to get him to take them with no luck, so we’re now waiting for a liquid version to arrive.
His leg splints are still going great, he wears them with no fuss every night and we’re actually off to Orthotics later to see about measuring him for his next ones.
His ankles/feet are turning in on themselves, due to balance issues and his constant tiptoe walking. His hamstrings are becoming extremely tight too. To tackle this we do daily physio, morning and night (then twice a week at school.) He also wears special insoles to prevent the tiptoe walking when we’re out and about.
His heart and lungs are still great which is always good to know, even though they’re generally the last muscles truly affected some boys do have problems early on.
He’ll also be starting some 1 on 1 swimming lessons very soon. Unfortunately I’m having no luck with getting him any hydrotherapy just yet, but weekly swimming will do wonders for him until then.
Our lives are still a whirlwind of appointments but he copes so well, he never seems bothered by anything, he’s such a happy boy.
Most of the time I hold it together. There’s still a deep sadness when I think about his future, but I cry less than I used to. I throw myself into enriching his life and all our fun keeps me distracted and his happiness reflects in me.
Keeping the hope alive, making memories, love beyond words 💙


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Nothing makes him livlier than being near or in water. We’re off to hydrotherapy now so he is very excited 💦


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Love ❤️ my white cozy sweatshirt I bought from @team_ethan_army!! Love the words printed on the back!! “Keep Moving Forward” ~ Get yours at http://www.meetethan.com/ 😊❤️ And sign up to play in EEVB’s Summer Tournament where all proceeds go to Ethan!!! EEVB.net #duchenemusculardystrophy #duchenneawareness #meetethan #sweatshirts #kickduchennesass


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dmd-guide.org. Ambulant : (of a patient) able to walk about;


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Waiting for the big waves. You can’t hear the squealing!


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Harrison is so proud of his new skills. He is learning about getting Snip to go, stop and turn. This is his proud face. ☺️


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