Monday, 28 March 2016
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
Wednesday, 9 March 2016
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
Saturday, 2 January 2016
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.
Saturday, 14 November 2015
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.
Thursday, 23 July 2015
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
Monday, 20 July 2015
Tremendous couple of weeks for Caring for ConnorWhat 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.