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 

smile emoticon

 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.

Caring for Conor Events

Caring for Connor walk

Right in the middle of this photo is our Connor, for whom we are all fighting and what our efforts yesterday and every other day are about. 

They don't know it yet but these children may not grow older together. Yesterday however, they had a long caring for Connor walk on our gorgeous coastline and here they are chillin' Westgate has never looked so lovely and blue. Let's hope there friendships last as Connor is going to need to close friends in the future. 

If you would like to support us in away big or small please get in touch via caring4connor@gmail.com or visit www.caring4connor.com of pop over to Connors face book page at facebook.com/caringforconnorcampaign

Thank you x

Abseil, Caring for Connor

A Caring for Connor team of supporters will be abseiling down Leas Cliff in Folkestone on Sunday the 14th June at 2pm. Could you be up for the challenge? Get directions 

The cost will be £12 plus a minimum of £75 in sponsorship. A just giving page can be set up for you to share via social media.

Come join us for a fab day out with a fab bunch of people and get you adrenaline pumping ;) x

Please get in contact if your interested caring4connor@gmail.com or pop over to connor website at www.caring4connor.com and have a look at our events page.

Here are a few pics from last abseil. 

 

Caring for Connor Walk

Sunday the 7th June at West Bay Cafe (on the prom) Sea Road, Westgate on Sea, Kent CT8 8QZ.

The Caring for Connor Campaign are hosting there annual walk for Connor since the Caring for Connor Campaign started. It's an opportunity for all Connor's family, friends & supporters to get together. 

Join us, help raise awareness for Connor & duchenne also possibly some funds. Enjoy a gentle stroll that the whole family can take part in including the family dog along our lovely coastline. 

Connor loves dressing up as superheroes, so dressing up is optional even if its just the kids although adults are welcome too.

We will walk to The Sunken Gardens and will be joined with a few characters for photo opportunities, a drink and a chance to buy a raffle ticket or two. Then gently stroll back for the raffle draw and collect your children's certificates.

It would be great if sponsorship was collected but again optional. Please let us know if you require a sponsor form and we'll email it to you.

Last year we were joined by 150+ people and we're hoping to top it again this year. Please spread the word and invite your friends, family and work colleagues. To find out more of what we are up to please visit www.caring4connor.com or connect with us on facebook at facebook.com/caringforconnorcampaign.

Two Year Duchenne Anniversary

The 28th March 2013 is a day we will never forget. We received the earth shattering news that our first born son Connor, conceived through long awaited IVF treatment had Duchenne Muscular Dystrophy. We sat in Green banks children’s centre, Garlinge with a Pediatrician and a physio therapist unaware of the news we were about to receive.

bit.ly/TwoYearDuchenneAnniversary

Please feel free to share, the more awareness the better for ‪#‎duchenne‬ xx

Fight against Duchenne Muscular Dystrophy

As most of you know we had to have ivf to have both our sons. Our eldest son Connor who is now five is slowing dying. It had nothing to do with ivf its not inherited. He has a progressive muscle wasting disease called‪#‎Duchenne‬ Muscular Dystrophy, this could happen to any family. It is rare muscle wasting disease thats attacking his body. He has a tendency to fall down rather too often, tires easily and finds stairs a challenge along with other things.The terrible statistical prognosis is that he will be in a power wheelchair, full time by the age of 10 and no longer be with us by age 20. We didn't know what to do so as a family we set up Caring for Connor Campaign to raise awareness and funds to hopefully find and fund cure for this cruel vile disease.

 I am doing a 135 foot abseil for Connor tomorrow. We are asking you if you can to make a donation to help us in our mission to keep our son. A massive THANK YOU to every one that has donated and continued to support us. Some people might not be able to contribute but you can show your support by sharing and telling every one about our mission. Thank you again Wayne, Connors dad xx You can also text CFCC50 your amount to 70070.https://www.justgiving.com/WayneOlsen

World Rare Disease Day

Something is happening on Sat 28th February, it's World Rare Disease Day (WRDD). We would like everyone to help create awareness. There are over 6000 different rare diseases worldwide. Duchenne Muscular Dystrophy is a rare disease. Its a progressive muscle wasting disease, taking every ability from children, NO treatments, NO cure & 
100% fatal. We are asking you to link for DMD. Linking two or more fingers. Be it your own, with someone else or ten others. Take a picture and share it with us. We need you to use hash tags (#)    Help us spread the word & create curiosity. Duchenne needs to end now. Help Save Our Children! But we need everyone on board, Especially YOU.
Upload your pics to.
https://www.facebook.com/caringforconnorcampaign https://twitter.com/caringforconnor
http://instagram.com/caringforconnorcampaign/
Thank you all xx

Rare Disease Day 

Rare Disease Day is on the 28th of February. Duchenne (DMD) is a rare disease. We would like everyone to help create awareness on this day. We are asking you to link for DMD. Linking two or more fingers be it you own, with someone else or ten others. 

Take a picture and share it with us

.https://www.facebook.com/caringforconnorcampaign

https://twitter.com/caringforconnor

http://instagram.com/caringforconnorcampaign/

We need you to use hash tags #Link4DMD #Fatal. 

Help us spread the word & create curiosity, Duchenne needs to end and now, save our children!

Everyone has fingers & phones, its free and so easy to do. So lets do it!! :) xx

A bit from the Isle of Thanet Gazette. Keep an eye out for Fridays paper xx | Thanet Gazette

Thanet groups and fundraisers celebrated at Heart of the Community awards night | Thanet Gazette

Say yes to #translarna drug to be fully funded on the nhs for #duchenne. 
https://www.facebook.com/video.php?v=816435035083563&set=vb.497180663675670&type=2&theater