Thanks for taking the time to visit my JustGiving page.

On Monday 30th May 2016, me and a group of mums (and a dad) connected by The Lily Foundation are running the Vitality London 10000 to raise money for this wonderful little charity.  We are all connected because we have all lost a child to mitochondrial disease, all part of a club that no-one wants to be part of, but together remembering our beautiful children and raising much needed funds for The Lily Foundation.

We all have our incredibly sad mito stories, here's mine:

Emily was a beautiful girl, with a radiant smile that would light up a room.  She was funny, loving, brave and determined.

When Emily was 10, she was diagnosed with MERRF, a mitochondrial disease.  It took over 4 years to get a diagnosis, after Emily started showing signs that something wasn't right. Up until the age of 4 she appeared to be a normal child, growing and meeting milestones, and then very gradually things started to change.  Emily started to get tired very easily, her growth rate slowed down dramatically and her fine and gross motor skills started to decline.  At the age of 9 Emily started to have myoclonic seizures and was diagnosed with epilepsy and was also starting to struggle to walk due to extreme fatigue. Finally, we got the devastating diagnosis of mitochondrial disease, a progressive disease for which there is no cure.

Emily started secondary school and with support was able to continue to lead a relatively normal life.  She would always have a go at anything, even if she found it difficult, and she inspired many people around her who were astounded by her bravery and courage.  

When Emily was 15 she suffered a period of continuous seizures and had a stroke, which left her unable to speak and move the left side of her body. Still Emily continued to baffle everyone by making progress and over the next few weeks we were hopeful of some recovery.  However, the cells in her body were continuing to stop working and the mitochondrial disease had reached a tipping point where things continued to quickly decline.  Emily suffered another stroke and was struggling to be able to breathe by herself and eventually needed a ventilator to support her breathing.  Over the next 12 months she continued to fight with so much bravery but eventually everything became too much and Emily had had enough.  She lost her courageous battle for life on 3 September 2014 at the age of 16.

Many people have never heard of mitochondrial disease, yet 1 in 200 babies born will have genetic mutations that may lead to the development of this illness by the age of 16.  The Lily Foundation has been raising money to help support families and to provide vital funds for research into this most awful disease and currently work with leading research centres in the UK.  I am extremely proud to be part of this charity, which has provided so much support, and it is also my other family to which I now belong.

In memory of Emily and all the other mito children, please give what you can and help to get rid of this truly horrendous disease.

Thank you.

Angela xx