Support Claire’s battle (MND/Lyme Disease)

Update posted by Carly Murphy On Feb 19, 2017

It is with a broken heart that I write Claire's final update.

It pains me to have to say that our beautiful Claire died on Monday 13 February. Claire had become so very ill and was admitted to hospital on Sunday 5 February with a chest infection and subsequently pneumonia. Claire was able to be transferred to Farleigh Hospice and left us peacefully on Monday morning.

I don't know where to begin to thank all the amazing people who have helped Claire with her battle.

The team at Farleigh Hospice for their outstanding care for Claire.

The love and devotion of her carers who certainly went the extra mile and beyond.

The tremendous affection of those friends who visited us in America and on our return to the UK and those who sent messages, cards and presents to Claire, and of course Emilie. Please be assured this helped Claire fight on with her usual strength, determination and grace.

In Claire's past updates she could not thank you all enough for your extraordinary generosity which enabled us to move to America for her treatment and have real hope. It was the hope that gave Claire the courage to fight for as long as she did and therefore gave us precious extra time together as a family.

Sadly it was not possible to save Claire but if love and kindness could have saved her she would still be with us.

Wherever you are imagining Claire is right now, she is able to run, jump and show us that wonderful smile. She will be hugging Emilie and dancing around us all, finally able to move her body again

Heartfelt thanks to you all

CJ and Emilie xxx

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Update posted by Carly Murphy On Apr 29, 2016

My wonderful doctor, who despite me having an emotional breakdown 15 minutes before this picture was taken, still has me smiling because he listens, understands and has answers to what's happening and provides realistic hope for the future. He doesn't just try to fit me in a tick box like at home and let me rot. He has picked up on and diagnosed so many other things that they had missed, or just didn't want to listen to me about. And he is doing everything in his power to help me. He doesn't believe this is ALS, but instead complex Lyme neuroborreliosis causing upper motor neurone damage amongst many other symptoms and I'm showing responses to treatment.

My appointment went well last week and yesterday I started my hardest month yet of treatment. I feel absolutely dreadful already but determined to carry on through the many many tears, frustrations and set backs.

I can't even begin to convey how hard this is and how much me and my family are so angry and hate my life right now. These are the most precious years with Emilie and I feel robbed of being her mummy, and the wonderful life we had as a family before this happened. The guilt I feel for her and taking her away from everything and one she knows and loves is huge and too much to cope with most days. The worst was two weeks' ago when she snuck into bed with me whilst I was having a seizure and when I came round she was stroking my hair and said 'what are you doing mummy?' - it broke my heart even more that it has already.

We really do take so much comfort and motivation from everyone's messages from home, and the truly amazing and inspirational things people are doing to fundraise and raise awareness for us - thank you so much with all of our hearts. I wouldn't still be here today without you 💚

Life and health is so precious, please make every day count, Claire xxx

#supportclairesbattle


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Update posted by Carly Murphy On Apr 29, 2016

My wonderful doctor, who despite me having an emotional breakdown 15 minutes before this picture was taken, still has me smiling because he listens, understands and has answers to what's happening and provides realistic hope for the future. He doesn't just try to fit me in a tick box like at home and let me rot. He has picked up on and diagnosed so many other things that they had missed, or just didn't want to listen to me about. And he is doing everything in his power to help me. He doesn't believe this is ALS, but instead complex Lyme neuroborreliosis causing upper motor neurone damage amongst many other symptoms and I'm showing responses to treatment.

My appointment went well last week and yesterday I started my hardest month yet of treatment. I feel absolutely dreadful already but determined to carry on through the many many tears, frustrations and set backs.

I can't even begin to convey how hard this is and how much me and my family are so angry and hate my life right now. These are the most precious years with Emilie and I feel robbed of being her mummy, and the wonderful life we had as a family before this happened. The guilt I feel for her and taking her away from everything and one she knows and loves is huge and too much to cope with most days. The worst was two weeks' ago when she snuck into bed with me whilst I was having a seizure and when I came round she was stroking my hair and said 'what are you doing mummy?' - it broke my heart even more that it has already.

We really do take so much comfort and motivation from everyone's messages from home, and the truly amazing and inspirational things people are doing to fundraise and raise awareness for us - thank you so much with all of our hearts. I wouldn't still be here today without you 💚

Life and health is so precious, please make every day count, Claire xxx

#supportclairesbattle


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Update posted by Carly Murphy On Apr 20, 2016

My wonderful doctor, who despite me having an emotional breakdown 15 minutes before this picture was taken, still has me smiling because he listens, understands and has answers to what's happening and provides realistic hope for the future. He doesn't just try to fit me in a tick box like at home and let me rot. He has picked up on and diagnosed so many other things that they had missed, or just didn't want to listen to me about. And he is doing everything in his power to help me. He doesn't believe this is ALS, but instead complex Lyme neuroborreliosis causing upper motor neurone damage amongst many other symptoms and I'm showing responses to treatment.

My appointment went well last week and yesterday I started my hardest month yet of treatment. I feel absolutely dreadful already but determined to carry on through the many many tears, frustrations and set backs.

I can't even begin to convey how hard this is and how much me and my family are so angry and hate my life right now. These are the most precious years with Emilie and I feel robbed of being her mummy, and the wonderful life we had as a family before this happened. The guilt I feel for her and taking her away from everything and one she knows and loves is huge and too much to cope with most days. The worst was two weeks' ago when she snuck into bed with me whilst I was having a seizure and when I came round she was stroking my hair and said 'what are you doing mummy?' - it broke my heart even more that it has already.

We really do take so much comfort and motivation from everyone's messages from home, and the truly amazing and inspirational things people are doing to fundraise and raise awareness for us - thank you so much with all of our hearts. I wouldn't still be here today without you 💚

Life and health is so precious, please make every day count, Claire xxx

#supportclairesbattle


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Thanks so much for the update we’ve been wondering how you are getting on. It does sound so difficult and frustrating but we are keeping everything crossed for you. Don’t feel too guilty about Emilie you are together, doing the best you can and she knows she is loved which is the most important thing of all. So pleased you’ve found some good support and we hope this new treatment brings some good results. Keep going Claire, sending love and strength for the difficult days Katie, Alex, Allegra and Elliot xx

Katie Deverell

Update posted by Apr 25

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Update posted by Carly Murphy On Jan 28, 2016

We have reached our first big milestone, that is raising £25,000 to support Claire's treatment. Thank you, thank you, thank you to everyone who has been so unbelievably generous with their support so far.

There have been some small, but positive, signs of progress in Claire's condition after just two months of treatment. This has given her and her family real hope that this will continue as long as she can continue to get the treatment she needs. She would not have got this far without the help of everyone who has contributed to the campaign. Your help has given her the chance of beating this disease.

The treatment Claire is undergoing is long term and will cost in excess of £60,000.

We are desperate to continue raising awareness about Lyme disease and to support Claire's treatment, with the hope that she will be eventually be able to come home and plan a future with her loved ones.

Please continue to spread the word and help help support the campaign.

Thank you xxxx

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Update posted by Carly Murphy On Jan 17, 2016

Hi everyone

Thank you all for your amazing continued support over the last few weeks - it's so much appreciated. We wanted to give you an update of what's been happening.

I'm about to start month two of treatment and things are going to ramp up a little. Month one went well and we saw some small signs of improvement, particularly with the non-ALS type symptoms. I'm still very much struggling with my balance and walking, and my strength in my arms and hands continue to deteriorate but hopefully that will stop soon. Overall the doctor is pleased with how things are going so that's good news.

The fundraising from everyone has been nothing short of amazing and we can't express enough how grateful we are to everyone. This month we have had a marathon from Sarah Hammond, a 5k every day for January by Rachel Sharpe and there is still to come the fantastic pamper and shopping evening being organised by my sister Laura Butler (that I so wish I could be at home for!) and the climb of Mount Snowden being done by Lindsay Griggs, Craig Hubble, Mark Gilley, David Sargeant, Sam May and Amie Hodgson - so much admiration of you all! Thank you so so much everyone, and please pass on our thanks to your family and friends for their kind sponsorship.

There are also some amazing events and activities being planned by so many people and I'm sure will be advertised here soon.

We have also done some great things in raising awareness of Lyme Disease. You have all contributed a huge amount of signatures to the government petition to review the NHS's test and treatment of Lyme which has been noted by the campaign leaders! We are also in touch with our MP, have sent our story to John Caudwell for use as a case study for his campaign, and have had interest in our story from the press. We have also had people contact us from all over the world about Lyme.

Thank you all again from the bottom of our hearts for everything. Claire, CJ & Emilie xxx

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Update posted by Carly Murphy On Dec 25, 2015

It's already Christmas at home so we wanted to wish all our wonderful family and friends a very Merry Christmas. It's still Christmas Eve here and I'm sure Father Christmas knows that Emilie is in a different, temporary home this year. Sadly they don't seem to have mince pies here to be able to leave out for him so he will have to make do with a cookie instead! ??

We wanted to take this opportunity to thank everyone who has so kindly donated to my fundraising appeal. We have been well and truly overwhelmed by the kind and lovely wishes and the unbelievable generosity of so many people. Doctors at home have told me to make the most of this last Christmas with Emilie and CJ, but thanks to you all, I stand a fighting chance of being able to share many more with my family. I will spend a part of tomorrow having two doses of IV antibiotics thanks to your amazing donations. We are more grateful than we can ever express with words. Thank you so so much.

We hope you all have the most wonderful Christmas. Lots of love to everyone, from Claire, CJ & Emilie xxx

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So sorry to hear the news, from all at Hayley's work.

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Great work Rachel! xx

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Very best wishes

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Very impressive Rachel!

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