Caring for Connor Campaign Fighting #duchenne

Long and personal post alert ;) ...After our duchenne diagnosis we were offered to see a psychologist, we declined until about a year on and we asked if Connor could be seen for challenging behaviour. Well today, well over a year down the line we got to meet her.

We decided not to take Connor on this visit so everything could be discussed openly without him in ears reach. What a ride it was for 90 minutes, drudging through the past and going back to that very day where our world got torn apart and duchenne entered.

We hadn't long had Kye, found out our eldest little boy was wasting away literally, he would lose the ability to walk by age 10, lose most upper body abilities in his teenage years, that he wouldn't live much beyond 20 years old. Kye being given a 50/50 chance of having duchenne, mum more than likely had given it to her boys, the extended family worried for their small children and un born babies. Some family leaving us, maybe they didn't know how to cope. Driving round the cliff in Westgate to Birchington thinking we could just drive off there and end the grief. It was grief we were suffering, we were mourning the loss of Connor before he'd even gone and suppose we still do.

We discussed the points of how he doesn't get invited to friends houses to play, maybe he's not as socially out going as other children. Are other parents scared to have him incase something goes wrong. Does he know more inside than he let's on or tells us. How we see the future for us and him, having friends and family for support, being included or excluded from lots things because he can't physically do them or get in a building to do them. Generally our lives not turning out the way we visualised, the fact we will never ever be that 'normal family'. Plus loads more.

The campaign, of how and when it started. The positivity it brings us, that we are channeling our focus and helping a situation that really is out of our control. What our aims were, how we have exceeded our first expectations with donating money into clinical trials, having funds set aside for a power wheel chair for when we need it etc.

In those short 90 minutes we had smiles, a few laughs and plenty of tears. We've come away with the knowledge we are stronger than we could have ever known we would be. We are a strong united family of four, we've got a very strong and close family unit surrounding us, a new duchenne family, so many supporters that are behind us and made loads of new friends along the way.

Although we left with puffy eyes we came out a bit more positive and thinking the psychologist even thinks we've done pretty great so far.

Next time it'll be a family meet and more of a 1 to 1 chat with Connor to see how he's doing. What he thinks about everything of anything, his family and his poorly muscles. We just hope he's as content as he appears to us.

Thank you to everyone who surrounds us. Knowing everyone is behind us brings us up on the darkest days ♡ xxx

Thank you for taking the time to read this and if you would like to join us at one of our events or organise one of your own please get in touch www.caring4connor.com Come show your support and like us on facebook at facebook.com/caringforconnorcampaign

The Caring for Connor fun day 

Save the date to your calender's.....Sunday 17th July 2016.

Plans are already in motion for our 3rd annual fun day at Jungle Jims, Quex Park in Birchington. 

We are looking for stalls to join us also some helpers, raffle, lucky dips, teddies & tombolas prizes. We need someone to open the day if anyone has a contact, entertainers, cake makers and are very open to suggestions to make the day an amazing success again. Please tag if you know someone or message if you'd like to be involved at facebook.com/caringforconnorcampaign or caring4connor@gmail.com It's going to be a great event, topping the last two.

 

Get directions 

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Colour for Connor day (Caring for Connor)

Colour for Connor day 

The Caring for Connor Campaign is inviting everyone to join in on this day of colour. Even if you work or attend a place where a uniform is worn, you may be able to wear bright colour just for the one day even if its just a brightly coloured tie or a pair of socks. Lets get people talking about Duchenne. If you would like to join us at one of our events or organise one of your own please get in touch www.caring4connor.com Come show your support and like us on facebook at facebook.com/caringforconnorcampaign Don't forget to like share and subscribe. Thank you for your support. 

#caringforconnor 

Emotional week

Quite an emotional week for a lot of parents this week with schools breaking up and children growing older, moving up a year and to new schools. 

Connor is leaving year one at still only 5 years old, one of the littlest in the year. One more year at primary school, next year it'll be junior school. With the normal progression rate of #duchenne he will lose his ability to walk by the time he leaves his junior school plus many other things. 

Looking through old photos and thinking why does he have to grow up!!  This is his 20 week scan photo and as soon as we saw it in the hospital we knew he loved us. Can you see you the ♡? :) 

We love this little man so much, we CANNOT let this disease win!! 

If you would like to help out in any way please just tell your friends and family about the Caring for Connor Campaign lets raise some much needed awareness for Connor and please show your support but popping over to Connor's facebook page and give him a like facebook.com/caringforconnorcampaign

Thank you xx

Tremendous couple of weeks for Caring for Connor

What a tremendous couple of weeks been. We've had our 2nd annual fun day at Jungle Jims plus dog show, Canterbury Angling competition, Swimathon at Hartsdown, Leg waxing, Walk2work and tomorrows Clairvoyance night at Lesters.

We truly are so thankful to everyone who is behind us on this mission of #duchenne. Joining us at events, buying merchandise, liking and sharing on social media, organising their own fundraisers etc. The kindness of people is so over whelming and it's really does give us great hope that we can beat this horrible disease and give Connor the best possible life he deserves.

If you've not heard of our story please take a couple of minutes to watch and share. It's a video we made not long after Connor's diagnosis in 2013. Help us spread the word of what duchenne does to these children.

Awareness is a key part in finding a treatment or cure and at the moment we have nothing, just hope.

Xxx

Connor's Sports Day 

So proud of this little guy yesterday. It was Connor's sport day and a hard day for us to watch. Seeing your child next to other children, you can see the struggles, differences and weaknesses more. The school and his classmates were fantastic as they all agreed because of Connor's poorly muscles that he should have a bit of a head start. This meant instead of him coming last by quite a lot, he finished around the same time as the others and from where we were standing he won the sack race. Although we believe it's not about the winning, it's the taking part that really counts. This isn't a great photo as it shows us that his stance is starting to change more like a boy with ‪#‎duchenne‬. His belly is starting to pop out and his body is changing shape in order to support himself as his muscles waste away more. On the bright side look at his little face and cheeky grin getting ready to run 

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 He loves running, climbing and doing what all children love. We can't let duchenne take this away from him. ‪#‎fightharder‬ ‪#‎cureduchenne‬

If you would like to find out more about Connor's please pop over to Connor's facebook page

facebook.com/caringforconnorcampaign

              Assault Course Challenge for Caring for Connor

Connor has no idea about the rare muscle wasting disease that is attacking his body Called Duchenne Muscular Dystrophy (and for now his parents would like to keep it that way).  He has a tendency to fall down rather too often, tires easily and finds stairs a challenge. 

The terrible statistical prognosis is that he will be in a power wheelchair, fulltime by the age of 10 and no longer be with us by age 20.
His out-of-the-blue diagnosis has been extraordinarily devastating for his parents, even more so because both Connor and little brother Kye, were the long-awaited arrivals following challenging IVF treatment.

At first it was a case of grieving, trying to get their heads around it. The dreams and visions of Connor’s life had been taken away. We all needed to do something positive and as a family came up with the Caring for Connor Campaign. 

On 5 April 2013, Caring for Connor Campaign was launched on Facebook. Almost every day the Campaign gains new supporters who have joined forces with the                                                family to raise awareness of, and ultimately find a cure for DMD. The goal is to                                           give Connor the best possible chance, through a fighting fund, for the latest treatment.

 On Saturday, October 3rd, 11am, Fowlmead Country Park Sandwich Road, Deal, Kent CT14 0BF. There will be an Assault Course including 19 specially designed obstacles, tunnels, balance beams, the rope walk, water jumps and tyre wall. We’ve secured 18 places so if your interested in joining us or making a Caring for Connor team of 6 please send us a message. Come say hi to Connor and his family and watch Connor's dad take on the assault course. 

Any queries please message us through Connor’s facebook page… https://www.facebook.com/caringforconnorcampaign or www.caring4connor.com or via email caring4connor@gmail.com or if you would like to make a donation please pop over to Connor's go fund me me page at http://www.gofundme.com/caring4connor

Thank you for taking the time to visit Connors page x please feel free to share.