Let's Do It for ME!: Happy 22nd Birthday Rosa!

Happy 22nd Birthday Rosa and may all your wishes come true!

Can it really be a year since Rosalind Amor launched her 21st Birthday Appeal?

With the help of her family, and with support from the staff of the nursing home, where she was being fed by naso-jejunum tube, Rosa's 21st Birthday Appeal raised a staggering £3881.69 plus £645.75 gift aid.

This helped to achieve our initial fundraising target of £100,000 to fully fund the foundation research project on gut microbiota in patients with myalgic encephalomyelitis at the University of East Anglia.

What a difference a year has made thanks to Rosa, her family, supporters, sponsors and all those they represent in our community, who should feel very proud indeed of what has been achieved and continues to be achieved by all the amazing, courageous and determined efforts to make the progress in research and treatment proposed by Invest in ME happen.

Thankfully, Rosa is doing a little better this birthday and is still an undercover operative in the planning group for Let's do it for ME! Earlier this year, Rosa posted that she'd had a dream that someone had given her £250,000 for LDIFME. We have shown that we can make our dreams come true, as we have since received a donation of £25,000 to enable the study on B cells to go ahead at University College London, and a further pledge of £200,000 for the clinical treatment trial of rituximab, bringing the total raised so far since we launched our campaign in July 2011 to a whopping £368,000 and rising!

Happy Birthday Rosa and may all your hopes and dreams come true!

Rosa's 21st Birthday

9th November 2012

All I want is to be like other 20 year olds; to travel and go to uni; to socialise and be independent; to walk, swim, dance and ride. I've already lost a decade of my life to this wretched illness. Please don't let me lose another.

I've had ME for 12 years. Before that, I was a healthy child. I was always playing; I loved Puppy and Kitty in my pocket sets; I went to ballet and modern dance lessons, swimming, watch club, was learning the violin and was a junior member of the RSPCA.

When I was eight my grandma and hamster died in quick succession, followed by a unknown virus of the gut. I had a terribly high temperature and was sick on everything, even water. Unfortunately, I didn't recover. I was diagnosed with ME quite quickly but sadly, this didn't make my treatment any better. I was admitted to hospital and given physio, then sent home and relapsed terribly.

I don't remember the following year. I know I lived on Complan all that time until we finally persuaded our doctors to give me a tube. I was admitted to hospital again for a few months - a painful experience.

I was paralysed and bed-ridden for 7 years and was tube-fed for 5 and a half. I remained at home, cared for by my parents. My symptoms included; paralysis especially my legs and swallow, hypersensitivity, headaches, muscle pain, 'brain fog', muteness, orthostatic intolerance, insomnia, spasms, severe nausea with a period of vomiting and extreme tiredness.

At 15 my health dramatically improved. I was able to stand and use a wheelchair. Briefly, I was even able to walk independently around the house though still needed a wheelchair outside. I became involved with my local wildlife trusts, visiting their reserves, attending 'wild learning' courses and part of a youth group.

However, from the end of 2009 my health slowly worsened again until last year, when I had a tooth infection and a bad back, I had a major crash. My worst problem this year is vomiting which worsened my tiredness, hypersensitivity, cognitive functioning and insomnia.

I always believed that one day my body would naturally heal itself and I'd return to my previous levels of health. Now I'm less confident of recovering unless someone finds a treatment.

Click here to read more from our 2012 December update on Rosa's Appeal.

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