Please sponsor me to support my effort and/or in lieu of a birthday gift.

I am fast approaching the age where a mid-life crisis is inevitable. I feel the need for a challenge - as if being a petite mum to a 98 percentile 14 month old boy isn't hard enough! My aim is to walk a marathon in chunks during the month of September with "Race At Your Pace".

I will never be able to run a marathon but there is no reason with a bit of planning and dedication that I cannot achieve a broken one.

You may or may not know that I was diagnosed with Juvenile Dermatomyositis just before my 6th birthday although looking back you could see I had been slowly declining in health for at least a year before. My immune system, the cells that were there to protect me from bugs and viruses were finding fault with my muscles and sought to destroy them. My muscle cells and the cells constituting the blood vessels around my muscles supplying nutrients and oxygen were viciously attacked causing muscle destruction and shrinkage. This resulted in a child who was once an active gymnast and dynamic dancer to a lethargic tearful internalised girl.

Our GP diagnosed hay fever, then sinusitis and eventually labelled me (a 5 year old child) as psychosomatic. Persistent parents meant I later received my true diagnosis (by a caring and vigilant general paediatrician at Southampton General Hospital) and a future that no one thought could be positive.

Juvenile Dermatomyositis is very rare, affecting 2 children per million per year in the UK. In 1983 the lone treatment of steroids (no cure) and exercise for a time scale of unknown did not bode well. Life got complicated when a week after my diagnosis I turned blue and lost the ability to swallow and talk. I was referred to the Muscle Clinic at Hammersmith Hospital under the care of Professor Dubowitz. Children before me diagnosed with JDM led a life in wheel chairs, crippled by muscle wastage and contractures, suffered with the long term side effects of steroids, the complications of calcinosis from inefficient treatment of active disease and failed diagnosis or even sadly died.

For me my diagnosis came at a time when there was a 'little bit of knowledge' about the disease. It doesn't mean that my JDM journey was problem free. I experienced multiple set backs, relapses and calcinosis right into adulthood. After my first serious relapse my consultant sat on a stool by my bed in the Hammersmith Hospital opposite my mum and said with his head in his hands "I just don't know what to do now". And then he asked my mum "what do you think I can do?". By agreeing to be a guinea pig for unproven treatments I was eventually responding to medications and able to reduce the steroids. I was left with permanent muscle weakness to my limbs, but most greatly to my arms and neck, a contracture in my wrist and various calcinosis as well as periods of overlaps into rheumatoid arthrisitis, scleroderma, raynaulds, ulcerative colitis, psorasis and syrogens.

I became medication free in 2013 with the motivation of becoming pregnant. Being pregnant was sadly not straight forward. After a few attempts, with an unproven conclusion that my immune system was somehow destroying the pregnancies I set upon a regime of medications to try and sustain a pregnancy - hydroxychlorquine, prednisone, progesterone and daily injections of clexane. I was overjoyed when my son was born at the end of June last year.

Why Myositis UK? Myositis UK is a very small national charity with a strong ethos to fund research solely into the inflammatory myopathies. When I was 18 I became a trustee and have volunteered my time to the charity helping in the office, giving talks, attending meetings, raising awareness, participating in work shops, helping at the London Marathon and sitting on steering committees but I have never actually raised funds on my own steam.

The charity is held in my heart. Now is the perfect time for me to set a physical challenge for my self and raise funds for a small charity that has achieved so much and helped so many since it was established in 1988 by my parents.

I don't require 40th birthday gifts. I have all I need - a wonderful husband and gorgeous son so a donation for my effort in lieu would be most appreciated.

It' simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.