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Two Years Old, Caring for Connor

We had the news on the 28th of March that Connor had Duchenne Muscular Dystrophy, a progressive muscle wasting disease that is 100% fatal and most with the disease don’t live to see past 20 years old.

We were in such a bad place after the news about Connor and couldn’t go on living the way we were so we had a chat with family and friends after seeing charities, campaigns etc that had been set up by others to help create awareness and funds for the disease. We thought if no one has ever heard of this vile disease how can anyone help it.

The government won’t fund anything for it because it’s classed as a rare disease although it doesn’t seem that rare, affecting 1 in 3,500 boys worldwide and some even rarer girls.Original c4c sketch (1)

On the 6th April 2013 The Caring for Connor Campaign went live to face book to help fight Duchenne, set the mission of raising awareness, create some funds and join forces with other families to end Duchenne. We set ourselves possible targets for fundraising. 1. Millions of pounds are needed to keep the potential drugs for it in clinical trials. 2. Connor will need a lot of specialist equipment in the future for example hoists & power chairs, these cost around £25,000. 3. Stems Cells could possibly be an option although not clinically trialed but could be worth a shot when he starts to lose his ability to walk.

Connor’s aunty took on the mission of designing a logo.  It’s come a long way from the first design to the finished, smarter final version. She has done an amazing job using Connors name and combining it with his favourite toy at the time, a car. Her mission didn’t just end there she designs new ‘Connor Cars’ for every event we do. car colargeWe have some amazing family members and without them, we don’t know where we’d be.

We were unsure of what the Caring for Connor Campaign would be like, whether anyone would support us on this mission. What if we couldn’t do it, no one cared and it was a total flop, these were things that crossed our minds but we thought sod it. We can only try, we need to save Connor and if we don’t try we will never know. So as a family we banded together, the face book page was up and running. Within the first few days we had three lovely guys jump in and offer us a wish list, so to speak of what we needed to get this started. They funded & donated balloons, t shirts & flyers. Since then people have contacted us to make & donate other items like our wristbands & trolley tokens.See our merchandise page.

Charity of Year 15 + logoTE

The campaign has grown, Connor’s name has grown. We are all recognised out and about, people stare, people come to us offer their support, people ask us questions. It’s quite a hard disease for people to understand as he looks fine but one day he won’t be, he is literally wasting away inside. The past two years have been mental, we’ve been on the TV, in the newspapers lots, on the radio 7 times. We always hated reading out loud at school and now will stand in front of hundreds creating awareness for this amazing little boy of ours. We’ve been entered for and entered competitions.  In the Heart of the Community award with the Isle of Thanet Gazette, the public got behind us, voted and we won 1st place. We’ve won Charity of the year with the Kent Messenger group. Connor got into the top 10 to be the face of Kinder Surprise. We’ve had the Barclays Premiership trophy in Thanet for Connor. He turned on the Christmas lights in Herne Bay. These are just a few of the amazing things and memories over the past two years and there are more coming. Never in a million years would we have thought this would be our life but it is.

The Caring for Connor campaign has gone from strength to strength, day by day. Not a week passes without someone contacting us and wanting to help us. The messages we receive are truly amazing and the help and support from the community is seriously overwhelming. What an amazing place we live in with even more amazing people in it. Total strangers have heard about Connor, this vile disease and what it is going to do to him. They want to throw themselves out of planes, down buildings, off cliffs, Cycle grueling km’s & climb Kilimanjaro. The list is endless for these daredevils. Then we have people organizing fundraising events of their own such us cake sales, caring for connor heart of the community 5book sales, strongman competitions, quiz nights etc. We have people and businesses who donate prizes as most of our events include a raffle or auction.

We run a lot of our own events for people to join if they wish. The turn outs are fabulous and so well supported. A lot of work goes in to the organizing of events, we do try and aim to give a great bit of entertainment for a reasonable price. If you’ve not yet been to one, pop along. Our 3rd annual Walk for Connor is on the 7th of June. This was our first ever event and each year it grows in size, which is incredible.

We truly are eternally grateful, it means so much to have everyone’s support. Having this campaign gives us a mega boost and we feel that we are doing something right. Hopefully all the hard work will pay off one day and believe me it’s really not easy or a walk in the park. It’s not something that has come easily and there are so many angles that need covering and always jobs to be done. I always think if Connor ends up the horrible way he is supposed to with Duchenne at least we can tell him we tried our best. We can tell him we fought hard for you and hopefully he’ll be proud of what we’d done. The keep sake box is tremendously large just two years on. We will have so many things to show him with so many faces that supported. We need to keep the momentum going. We’ve got so much going on in the way of events. Join us, help us build it bigger, better and let’s do this for Connor!!

Another MASSIVE THANK YOU to every single person out there that has helped us. YOU are the people that make this dream achievable and together we can end Duchenne.

caring for connor

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