A very dear friend of mine received the most devastating news last year regarding her health and is now facing a real battle to stabilise her condition. In order to help Claire in her battle, I have decided to undertake a sponsored event. Anyone who knows me will know how scared I am of spiders, so to say that a spider encounter would be a challenge for me is an understatement! At the beginning of February, with the help of the lovely people at Shepreth Wildlife Park, I will be handling a number of breeds of tarantula for a sponsored spider encounter. Your support would be massively appreciated so please dig deep and sponsor me in support of my lovely friend Claire and her beautiful family.
This is Claire's story:
Claire received the devastation news last 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.
Thank you for taking the time to read this. Your sponsorship would be massively appreciated.