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#duchenne

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Great night, well done @alexandraclairejohnson #duchenne #worldsstrongestboys #joiningjack Stole your pic @kentyad 😜

Wauw wat een fantastisch resultaat!!! #DuchenneHeroes #Trots #Duchenne #mountainbiketocht

Today's #SOSDuchenneSmile is the gorgeous 4 year old Mason - you are not alone💫 .

#DuchenneSmile #Link4DMD #Duchenne

Hoje é Dia Nacional de Luta da Pessoa com Deficiência. Em nossa família, temos esse tesouro, que mesmo tão jovem, já aguentou poucas e boas. Erros e irresponsabilidades no diagnóstico, burocracia do governo, incapacidade do sistema, discriminação, olhares desagradáveis de "curiosidade", locais não adaptados ou falsamente adaptados... Nossa, são tantas situações. Mas no fim, tudo o que passamos e vamos passar, vale a pena. Ter alguém com deficiência na família é uma benção! E neste dia, eu faço um pedido: empatia! Se aplicarmos o exercício da empatia, com absoluta certeza, vamos conseguir tornar o mundo um lugar melhor e digno para todas as pessoas com deficiência e, assim, todos nós teremos o prazer de conviver com esses seres iluminados e tão especiais. #SerDiferenteÉNormal #DiaNacionalDeLutaDaPessoaComDeficiência #Deficiência #Duchenne

Conor is a young man living with #Duchenne muscular dystrophy who loves attending music festivals and posing with Bowie! Read his story & learn more about #Duchenne here: http://bit.ly/CDC-ConorStory #WDAD17 #CDC #PublicHealth

[E]n la lucha... @dppspain ¿Qué es #duchenne ?
Y.

Currently two hours ahead of schedule, Pen Y Fan done in two hours, Cadair totally smashed in just four hours, both with pretty awful conditions. Having a feed and then just the highest mountain in England and Wales to go!
Feet starting to show signs of the past few weekends, and was one point where I just had nothing in the tank for my legs. Highly doubt we’re going to get parking at Snowdon for the Pyg Path, so we could be faced with the depressing slog up Llanberis 😕 #welsh3peaks #welshthreepeaks #cadairidris #penyfan #hikingwalking #mountaineering #mountains #cloud #wind #rain #duchenne #duchenneuk #worldsstrongestboys #wales #getoutside #getoutdoors #challenge

MOST RECENT

#hospitalsantjoandedeu #farinatorace #farinatorace2017 #duchenne https://www.migranodearena.org/es/reto/16716/farinatorace4duchenne/

Great night, well done @alexandraclairejohnson #duchenne #worldsstrongestboys #joiningjack Stole your pic @kentyad 😜

Lady B Face Painting is super excited and honored to be participating at this awesome event! Come have an amazing time and support an amazing cause! ♡♡♡
#ladybfacepainting #dmdevent #fightforcure #duchenne #awareness

We’re done. For some reason we decided to jog most of the way down Snowdon. Meaning we finished Snowdon in 3 1/2 hours. Our time for the full challenge was 14 hours, 10 hours to spare! Could not have done without this guy @simon.whybrow hell of a few weekends! Macmillan Mighty Hike,
Thames Path 78km, Yorkshire 3 Peaks and now this. Please please please consider donating to my justgiving page for Duchenne’s UK (Link in comments)! We’re heading home now to drink a lot of beer! #welsh3peaks #goals #walking #hiking #worldsstrongestboys #duchenne #duchenneuk #wales #snowdon #cadairidris #penyfan #smashedit #gooutside #getoutside #mountaineering

9/23: In an Emergency -- Consider a wearing a medical ID to help alert first responders to key medical information at a glance: EndDuchenne.org/medicalid

Wauw wat een fantastisch resultaat!!! #DuchenneHeroes #Trots #Duchenne #mountainbiketocht

Spannend...De Heroes komen elk moment aan bij de finish!!! #DuchenneHeroes #mountainbiketocht #Duchenne

The last 24 hours have been a bit of a whirlwind. We left for Ohio Friday afternoon, but the moments leading up to our take off were nothing short of eventful. •
This first picture was the calm before the storm.
At about 7pm Thursday night we had to rush our middle son to the ER because he came down with a cold and was wheezing so bad he couldn't talk. Scary. •
While we sat at one hospital my brother and sister-in-law welcomed a beautiful baby girl to the world via an emergency C-section, at a different hospital. Everyone is safe and healthy now, but it too had its scary moments.
•
We left the ER around midnight, finished packing in the wee hours of the morn, grabbed a few hour of sleep before we went down to the hospital to meet sweet Sadie Friday morning. •
As we loaded up the last of the things to head to the airport, Fritz took a nasty fall off his brothers' pedal kart and came away with a huge knock to his forehead. •
A long flight followed, but thankfully, we finally made it to ohio! •
We are hoping to be done with crazy unexpected happenings and that our trip more productive than well, insane. •
On Tuesday Fritz will seeing a top doc in the world of Duchenne, at Nationwide children's hospital. We are so grateful for friends that live near Columbus who open up their home to us,
making traveling this far for just one doctors appointment, all the more worth it! •
We look forward to learning how we can best care for Fritz, spending time with friends, and maybe even relaxing a little bit.....🤞
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Life with kids is definitely an adventure, not a vacation.
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#fritzandfriends #endduchenne #dmd #duchenneawareness #duchenne #sharingiscaring #reallife #adventuring #notvacation #nonprofit #nonprofitorganization

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