Thanks for taking the time to visit my JustGiving page (grab a cuppa -  it's a bit of a long one!)

My youngest daughter Mia is just about to turn 21 years old, a time in her life that should be bloomin' hard work, but busy, fun and exciting all at the same time!  New challenges, friends, college, study, and of course a hectic social life!  

In December 2018 her life became hard work for a different and very unexpected reason: she was diagnosed with Myasthenia Gravis, a rare auto-immune muscle weakening condition that affects most of the muscles in the body.  It causes severe muscle fatigue, affects concentration, noise and light tolerance, and can completely wipe sufferers out after carrying out the most simplest of tasks that most people take for granted.  

After becoming gradually unwell over the previous few months before her diagnosis but no-one could put their finger on what was wrong, she gradually became unable to talk properly, smile, eat/drink, and even swallow water.  

When a hospital stay proved inconclusive, and doctors were at a loss as to what was wrong, we thought she may have had a stroke when her left eye began to droop (usually one of the first symptoms of MG).  She was immediately seen by a neurologist and Myasthenia Gravis was diagnosed.  

I won't lie when I say I was beginning to think other things at this point, as the symptoms are very similar to other illnesses that aren't so treatable.  Initially, nothing about Myasthenia Gravis came up when I searched for possible reasons why Mia was so ill, but conditions like MND, ALS and MS did.  Of course I would love to help find a cure for this awful condition, but as importantly, I want to raise awareness about it, as most people (even some medics we have encountered over this time) haven't heard of it, and therefore don't know how to deal with someone who suffers with it.

To our relief, although the condition is incurable, it is treatable, and some people with MG can manage to live a relatively normal life, with well managed medication.  It affects driving, studying, working and Mia had to give up her dream of going to University.  18 months ago she was chosen to be part of a medical trial through the John Radcliffe Hospital in Oxford, to trial a drug for MG that is yet to be liscenced in the UK.  The JR has a specialist Myasthenia clinic there which Mia attends regularly, and their care of her is second to none.  

Since embarking on the trial, Mia has been able to work, becoming a supervisor for Dune, and this in itself seemed almost impossible to envisage 2 years ago.  She still has her tough days, but just the fact she is now working almost full-time, learning to drive and is considering studying again, is testament to her determination to not let this condition beat her.  Even the University dream may not be lost!

She has my utmost admiration for what she has overcome in the last 5 years and I want to do all I can to help her and others in her situation.

Thank you so much for reading...and even if you can donate just a quid or two it will make me run a bit faster on these little legs of mine :)

Thank you from the bottom of my heart,

Jo xxx