Supporting Claire – London to Paris Bike Ride 2016

Dear family and friends,

Having only ridden a “Boris Bike” in my adult years, I will be attempting to cycle from London to Paris in September 2016 to raise money for an incredibly brave friend who received the most devastating news earlier this year.

Claire was told 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 travelled to the US to see a specialist infectious disease doctor in Lyme Disease who has confirmed her diagnosis and recommended that, given the severity of her symptoms, he would like her to have IV antibiotic therapy lasting 7-9 months. The cost of this antibiotic therapy alone is $47,000, not including consultants fees, blood test, supplements, relocation costs, etc.

The 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 our 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

Lenny

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