Caring for Connor 3rd annual Family Fun day

Where does the time go ?....

Where does the time go? .... 

Three years ago today our life came crumbling down around us. We had the diagnosis of the no treatments, no cure and 100% fatal, duchenne muscular dystrophy. We will never forget being told to "go home and love him there is nothing you can do."

Our days are a little brighter and tears are getting lighter as time goes on. It's still the first thing we think of in a morning and last thing at night. It never leaves us with its constant little reminders that it is slowly and gradually taking over Connor's precious little body. 

We have fight, we have hope and so much support. One day we will win the war!! ♡xx

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

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.

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

Colour For Connor Day 
The ongoing Caring for Connor Campaign is sponsoring its second-annual “Colour For Connor Day,” a positive call-of-action to bring awareness to the rare form of MD known as Duchenne Muscular Dystrophy (DMD). The day-long event takes place on Friday, November 28, 2014.

Young Connor Olsen was diagnosed with the devastating Duchenne in 2013, and today, his family continues to make it their mission to raise awareness and funds for him and all boys with the illness, via Facebook (https://www.facebook.com/caringforconnorcampaign).

The 2014 “Colour For Connor Day” invites all to wear bright colours to help amplify the discussion about Duchenne Muscular Dystrophy. Even those who work at or attend schools that mandate a particularly dress code or uniform might add a brightly coloured tie or socks to acknowledge the occasion.

The event is truly all about raising awareness, while continuing efforts to raise funds for Connor and the other young children affected by DMD. Participants are encouraged to post photos, as well as “signing up” on a proprietary Facebook page for the event: search “Colour for Connor Day.” https://www.facebook.com/events/1554764004743178/

ABOUT
Connor’s parents Georgina and Wayne Olsen live in Westgate-on-Sea in Kent. The family recently welcomed a second son, Kye. Connor was diagnosed with Duchenne Muscular Dystrophy (DMD) in March 2013. The current prognosis for this muscle wasting disease calls for Connor to be in a wheelchair full time by age 10, with the potential for his tragic death around 20 years old.

Although there is no cure for this cruel disease, treatment options continue to make progress. The Caring for Connor Campaign hope to not only benefit Connor, but all other boys who are unlucky enough to be diagnosed with this heartbreaking disease.

For more information, please visit:
www.caring4connor.com