Support Claire’s battle (MND/Lyme Disease)

  • £49,059
    raised of £60,000.00 goal
81% Funded
1387 Donors
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Our beautiful and dear friend and sister, Claire Diss, needs your help!!

Claire received the most devastating news earlier this year, that she was suffering from a form of Motor Neurone Disease (MND) - a progressive disease involving degeneration of the motor neurons and wasting of the muscles, for which there is no cure.

In just a few month's Claire's condition has worsened considerably and the medical profession in the UK have now diagnosed her with ALS - the most progressive form of MND with a life expectancy of 2-5 years. The speed in which this awful disease has taken over Claire's ability to do the many things that we all take for granted, led her to question whether there may be some other cause of her symptoms which are not all typical of ALS.

After a friend suggested she look into the possibility that she may be suffering with Lyme Disease, Claire was tested in the UK and the results came back negative. At the moment the tests for Lyme that are being carried out in the UK on the NHS are not thorough enough to be able to detect Lyme disease in all cases, and the NHS is not equipped or able to adequately treat patients who have the disease.

Eventually after undergoing tests by a specialist clinic in Germany, Claire tested positive for Lyme (and multiple co-infections) – a bacterial infection spread by infected ticks which can develop into serious and long-lasting symptoms. These can include (amongst many things) pain and swelling in the joints, problems affecting the nervous system, heart problems and meningitis (which Claire was admitted to hospital with in 2014).

With the right treatment there is real hope that Claire will be able to stabilise her condition which is worsening with each day that passes.

The only problem is that the treatment she needs is not available in the UK. The treatment is expensive, and Claire has traveled to the US to see a specialist infectious disease doctor in Lyme Disease who has confirmed her diagnosis. He has recommended that, given the severity of her symptoms, he would like her to have aggressive IV antibiotic therapy lasting many months.The cost of this antibiotic therapy alone is $47,000. With consultants fees, blood tests, supplements and relocation costs on top, all in all the cost for Claire to get this treatment is estimated to be in the region of £100,000.

Claire's doctor cannot guarantee any success but is confident in achieving a halting of further progression of ALS. They are hopeful that given her age (Claire is their youngest ever ALS presenting patient by some 15+ years) and the fact that most of her damage is upper motor neurone and she has no difficulty breathing or swallowing at the moment, that there may be a chance that she can regain some of the functionality that she has lost.

To give Claire the chance to beat this disease, and to look forward to a long and happy future with her loving husband and beautiful daughter Emilie, she needs your help.

Please donate what you can to help fund the costs of the medical treatment that Claire so urgently needs.

Thank you for your help xxx


The incidence of Lyme disease is increasing dramatically across Europe. Every year, hundreds of thousands of people contract Lyme disease and because of inaccurate testing, many go undiagnosed and untreated.

Please take a moment to sign the petition to the government 'Develop accurate NHS tests and effective treatment protocols for Lyme Disease' by clicking on the link below:

https://petition.parliament.uk/signatures/5713208/...


If you would like to find out more about this terrible disease you can visit:

www.lymediseaseaction.org.uk

or

www.lymediseaseuk.com






Fundraising Team

  • Carly Murphy
  •  
  • Campaign Fund Manager
  • Lindsay Griggs
  •  
  • Events Manager
  •  
  • UK
  • Kirsty Diss
  •  
  • Family liaison officer
  • Keeley Bedford
  •  
  • Campaign Assistant
  • Laura Sims
  •  
  • Fundraising Co-ordinator
  • Laura Butler
  •  
  • Social Media Manager
  • Laura Phillips
  •  
  • Media Liaison Manager
  • Simon Peck
  •  
  • Marketing Manager
  • Jane Coplen
  •  
  • Campaign Assistant

Donors

  • Anonymous
  • Donated on Feb 06, 2021
Amount Hidden
  • Anonymous
  • Donated on Apr 18, 2020
  • Good luck

£10.00
  • mofoso fistos
  • Posted On Feb 14, 2020
  • My first symptoms of ALS occurred in 2011, but was diagnosed in 2013. I had severe symptoms ranging from shortness of breath, balance problems, couldn’t walk without a walker or a power chair, i had difficulty swallowing and fatigue. I was given medications which helped but only for a short burst of time, then i decided to try alternative measures and began on ALS Formula treatment from Akanni herbal centre t, It has made a tremendous difference for me (Visit www. akanniherbalcentre .com). I had improved walking balance, increased appetite, muscle strength, improved eyesight and others.

Feb 19

Final Update from CJ and Emilie

Update posted by Carly Murphy at 06:43 pm

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. . . . .

See update
1
Apr 29

Message from Claire

Update posted by Carly Murphy at 04:23 pm

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. . . . .

See update
0
Apr 29

Message from Claire

Update posted by Carly Murphy at 04:23 pm

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. . . . .

See update
0
Apr 20

Message from Claire

Update posted by Carly Murphy at 06:42 am

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. . . . .

See update
1
Jan 28

Fantastic News!!!!!

Update posted by Carly Murphy at 09:26 pm

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. . . . .

See update
0
Jan 17

Update on Claire's treatment in the US

Update posted by Carly Murphy at 08:15 pm

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. . . . .

See update
0
Dec 25

Christmas update straight from Claire

Update posted by Carly Murphy at 11:38 am

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. . . . .

See update
0

Donors & Comments

1387 donors
  • Anonymous
  • Donated on Feb 06, 2021
Amount Hidden
  • Anonymous
  • Donated on Apr 18, 2020
  • Good luck

£10.00
  • mofoso fistos
  • Posted On Feb 14, 2020
  • My first symptoms of ALS occurred in 2011, but was diagnosed in 2013. I had severe symptoms ranging from shortness of breath, balance problems, couldn’t walk without a walker or a power chair, i had difficulty swallowing and fatigue. I was given medications which helped but only for a short burst of time, then i decided to try alternative measures and began on ALS Formula treatment from Akanni herbal centre t, It has made a tremendous difference for me (Visit www. akanniherbalcentre .com). I had improved walking balance, increased appetite, muscle strength, improved eyesight and others.

  • GIFT LEE
  • Posted On Jul 06, 2019
  • I’m so excited to see my mother healthy, walking with her two legs. She can even exercise her body. This is the miracle i have been praying for all my life. I just want to let the world know that there is a great herbal doctor who can easily eliminate ALS/MND in less than 7 weeks, with herbal treatment. Here is online information to connect with Dr.Joe. website: ww w. besthealthherbalcentre. c om.

  • Anonymous
  • Donated on Feb 28, 2019
  • Stay strong!

Amount Hidden
  • ryn jacop
  • Posted On Aug 13, 2018
  • My mother was diagnosed with ALS in May 2015. Her doctor put her on riluzole, letting her know there was no cure.the symptoms started out with a "foot drop" on her left foot. From there her left leg lost all muscle tone and then the entire left leg muscles was gone.total cure herbal foundation was her only means of getting rid of this disease totally after several years of medical treatment,you can as well place your order via http://totalcureherbsfoundation.com they have the right herbal formula that help get rid of ALS totally

  • Hayley Voake
  • Donated on Feb 14, 2017
  • So sorry to hear the news, from all at Hayley's work.

£100.00
  • Anonymous
  • Donated on Jan 06, 2017
Amount Hidden
  • Lindsay McQuillian
  • Donated on Jan 03, 2017
£30.00
  • Sonia TT
  • Donated on Jan 03, 2017
  • Great work Rachel! xx

£20.00
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£49,059
raised of £60,000.00 goal
81% Funded
1387 Donors

Help this ongoing fundraising campaign by making a donation and spreading the word.

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