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Hi, I am Mandy and my daughter Katie was diagnosed with ME/CFS (Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome) at the age of 12, four days before Christmas 2012. Brenda is my sister-in-law and Katie's Aunty and has kindly said she wants to help me fundraise for Invest in ME this year as she has seen how life changing this illness is. We have decided to walk 12km in May ME awareness month, 1 km for each year Katie was healthy and living a normal, active childhood until ME took that away and left her unable to dance or part take in the many sporting activities she did. She was unable to attend school at all for 6 months then went part time for a short time, before a relapse took her out of school completely for another 8 months. Her M.E resulted in her having only 3 hours a week home tutoring and virtually no education at school while preparing for her GCSEs. She is a very bright girl who was expected to do well in all her exams but had to reduce the amount she could study for down to 5 subjects, she did brilliantly and got 5 GCSEs including an A and AB. The isolation that ME brings meant she lost friends and for a long time had no social life at all. She has missed a huge chunk of her childhood and needs a wheelchair to go out walking long distances without it making her symptoms worse. Her symtoms include, fatigue, stomach pain and spasms, headaches, brain fog, lack of temperature control, trouble sleeping, painful limbs and itchy skin. Katie has been slowly improving since leaving school and is managing to do 1 A level at college part time, she manages to do a couple of hours work on a Saturday and has started to have a bit of a social life. She still has a long way to go and is not leading a normal 16 year olds life but we are hoping she will get there. There are many children with ME who end up bedridden, in severe pain constantly and sometimes having to be fed through a tube. Many children though not all do recover by adulthood but unfortunately adults who have it do not have as good recovery rate. There is no cure and treatment is more or less self management. This is why more research is needed but not enough is funded by the government so fundraising is very important. Please help us to raise funds for this worthy charity and help us find a cure. Thank you so much for taking the time to read this and hopefully donating.
I am also organising a charity pie and peas night on May 19th with bingo and raffle and funds also going go Invest in ME.
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