2,845 Posts

caringforconnorcampaign Our new £1, Caring for Connor #pens are now being stocked at.... * The School Wear Centre, #Margate
* West Bay Cafe, #Westgate
* Monty's Fruit & Veg, #Birchington * Lloyds Bank, #HerneBay * Lansdell Soft Drinks, #Whitstable
* Sweet Temptations, #Broadstairs
We'd like some in other #towns. If anyone has any ideas please get in contact. Spreading #duchenne awareness out further & wider :) xx #help #helping #raiseawareness #support #cure #duchennemusculardystrophy #love #connor #problems #people #world #caringforconnor #findacure #children #hero #nevergiveup #find #thanet #c4c #time #saveconnor
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X-Pro II Batualmón Batucada
  •   taylor_hill9 Hii we are here to make your day :) We are creating something very special and would love for you to read our last post 11h

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maxsbigride Please remember to vote for Max's Big Ride in the @indie88toronto #winabillboard contest. You can vote daily to help save the lives of boys like Max. Link to vote in profile. #endduchenne #duchenne #musculardystrophy @endmuscledisease #family #love #fight #nevergiveup #win #hamont #burlon #cargobike #canada #toronto #ottawa 15h

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msjamielynn Although we are still very new to this process it's seems we should be used to the doctors now. At one point it felt like we were at the doctors every couple days. But, today we finally had the one appt we have been the most nervous about. His heart.
The beginning of the appt began with an EKG which was extremely tough. He was so scared and sobbed in fear from beginning to end. I had to hold him down to try to keep him still and calm him down so they could get an accurate reading. But after that we were okay. By the time we got into the room to do the echocardiogram he was completely relaxed. It took almost 20 minutes and he did so well.
And it is with the utmost happiness to relay that Ethan's heart is at full function. Completely healthy. The relief we feel cannot even be put into words. 2 more years until he tests again! Today was a great day! #ethansrace #enddmd #duchenne #duchennesucks #myhero #bravebaby #ilovehim
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  •   hey_brittanijay I'm really glad he is doing so well️ stay strong always😇 1d
  •   yolbradley That's awesome!! 1d
  •   momjolly Yay!! Good test days are always a relief! 1d

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maxsbigride Be sure to vote for Max's Big Ride in the @indie88toronto #winabillboard contest. You can vote once a day until May 10th. Thanks so much for your ongoing support. Link to vote in profile. #maxsbigride #musculardystrophy #defeatduchenne #duchenne #getbusy #win #love #family #life #awesome #popular #inspire 2d

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msjamielynn On our way to one of the few doctors appts I'm actually scared of. Today we will find out the condition Ethan's heart is in. Thus far he's been so healthy and I'm sure today will be no exception. But, there is no promises and with this stupid disease things can change so quickly. Praying my babies heart is still at 100%. #ethanjames #ethansrace #enddmd #duchenne #endduchenne #ihatethis #ilovehim 2d

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adan_gofundme First time Adan asked us to put him on his side. His abdomen was enlarged and very painful. This is was the position he was comfortable in. As you can see his body isn't like yours and mine, his back is curved 120% by now that's why you see his right side larger. His abdomen is still bloated even though he is current on bowel movements. #Duchenne sucks 2d

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maxsbigride Please vote to help Max win a billboard in downtown Toronto. Thanks!! Link to vote in profile. #defeatduchenne #getbusy #maxsbigride #duchenne @indie88toronto 2d

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Normal Irene Alonso del Río
ireneadr Gestos solidarios. Selfies por Duchenne. Gracias! #duchenne #distrofiamuscular #dontwalkalone 3d

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sheaholbrook #tbt 2010 first pro event with @pirelliwc at St. Pete. Such great memories of amazing people coming together to pay it forward. Christian and Grayson were the first #Duchenne muscular dystrophy boys we had out to the races. Over the course of a month through family, friends and strangers we raised about $15,000 for Parent Project Muscular Dystrophy. Marcus Haselgrove (at the time working for Grand-Am team Autohaus) transported and managed us for our pro debut. Today, he's the Director of Competition for PWC. Mom, dad, boyfriend and the guy that got us addicted to motorsports are also in this picture. A lot has changed but when I look at this picture I'm glad to say we haven't changed. 3d

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