caringforconnor

[caringforconnor]

Shaping up nicely, its an amazing raffle we've got this year! Sunday 22nd July, don't forget to grab your tickets. Another thank you goes to Brackenborough Plastering, The Jolly Farmer and In-detail valeting/detailing

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Lots of lovely prizes and vouchers coming in from such supportive local businesses. Big thank you to Edward's supermarket Westgate, Sanctuary Hernebay and Style Photography Hernebay. If anyone else has anything they could donate please send us a message 👍 xxx

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🐾 A fun agility course will be set up and running all day. Grab your pooch a free FISH4DOGS goody bag when you have a go! (While stocks last!) 🐾

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Physio and OT visit yesterday to discuss plans for more exercises to keep him mobile. He's walking more and more on his tip toes now which means he's loosing ankle range and strength in his legs 😤

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🐾 Here’s some of last years wonderful youngsters with their gorgeous four legged friends! We’re looking forward to seeing many of you there again, hoping to win a trophy or rosette! 🐾

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**Please Share Share Share** Not long now!!

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How lovely is this? A conference is taking place in Arizona and #Sarepta, a pharmaceutical company has used photos of our #duchenne children to produce a #DuchenneMosaic. Found our Connor 💙

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🐾Just a little taster of the fun we’re going to have! 🐾You might think you naturally look like your dog or you might want to make an extra bit of effort....here’s some inspiration for you!! 🐾

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🐾 Registration is from 11a.m. and it’s £1.50 per class. We’ve added a few new classes this year.... so get creative for the dog that looks most like it’s owner and get practicing for musical sits! It’s going to be fun! 🐾

[caringforconnor]

Yesterday the little bit of hope we had got devastatingly taken away from us. Today the reality seriously kicked in and I've been an emotional mess and unable to function (sorry to those involved). Tomorrow I'm hoping will be a fighting fit day again....Need to keep hope alive....somehow with #duchenne Thank you to everyone for your support, kind calls and messages 😍💙

[caringforconnor]

Lunch time today came with devestating news for us as a family and the whole duchenne community. The drug that had been worked on for 15 years in the labs, the drug that if it worked would treat all kids with duchenne no matter which mutuation they had, the drug we've watched and so wanted to work from our diagnosis day. The trial Connor and 39 other boys had been taking part in has been discontinued, it wasnt meeting the endpoint measures it hoped too. Connor completed the 1b safety trial and the phase 2 so over two years for both. Our hopes have been shattered today and feeling broken, hope is all we have in this world of duchenne. Before we went for screening to go on the trial we knew this could be the case, we could have had serious side effects and it could be stopped at any time. We hoped it wouldn't yet here we are today and the dosing has ended with immediate effect. Participating in a trial you do take a risk, you except to be poked and prodded, have muscle biopsies taken, blood draws, spend time in an mri scanner, sleepless nights in hospital and more. There is no guarantee it will work so you always have that in the back of your mind. Connor and all the other kids have been so brave to endure this process. They have helped the scientists, gave it their best shot and unfortunately it wasn't ment to be. Hopefully lessons have been learned by the drug company, others will learn too and they can share the data with others and help find the real magic medicine we all desperately need. These boys and families have 100% done their bit for #duchenne ....WELL DONE TO THEM!! 👊💪👊💪👊💪👊💪 If we had a chance to do it all again? Yes we bloody would without a shadow of a doubt! Tomorrow is a new day, time to move onwards, upwards and start a new plan to keep Connor as healthy and supplemented as best we possibly can. Like some of our Caring for Connor jumpers say......

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We have a couple if spaces become available for stall holders. If anyone would like one please get in touch asap to caring4connor@gmail.com. Those booked already and havent paid please do asap to confirm your space. Thank you xx Hopefully we can attract these crowds for the 5th year running 👌👍💙 #duchenne

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Pure perfection right here! Our little man Connor, we can't let #duchenne take him! Please share and change profiles to public to help the #DuchenneMosaic #Sarepta

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From twitter..... Thank you to #AshfordSnowdogs for the shout out and to these two lovely ladies raising awareness for Connor and #duchenne painting in their Caring for Connor t-shirts 💙 Cant wait to see the finished pup 😁

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Delivery!!! If anyone would like some to distribute or put in their work place please give us a shout :) xx

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So this arrived yesterday to help save Connors tired legs whilst showering 😤 The bath is harder to get in/out of and that doesnt help the grown ups backs as he gets bigger and heavier. The boys love it though and what a perfect lego colour blue 💙

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Thats it our June christmas is finished! Christmas tree and decs are down til December. We've had a lovely few days with our nearest and dearests. The boys have had an amazing time (only down side Connors tiredness after his camping trip) its been like a real christmas and we even had some snow lol. Thank you to everyone who contributed with cards, gifts, money, vouchers etc. These boys have been so spoilt, the generosity of people has been so overwhelming, we didnt expect this at all! The door bell hardly stopped ringing on saturday with delivery drivers, parcels left on the drive and an enormous elf delivery. Lots of people thought we were mad 😂 And some people didn't understand why....the reason behind the idea was because life is too short and especially with #duchenne so we thought we cram an extra christmas in for our special boys while time is still on our side 🎅🌲🍾🎁🎉💙 MASSIVE thank you to everyone who took the time 💙💙 Now for the next mission 😉😍