My name is Katie and after being unwell since a first attack of encephalopathy in February 2014, when my then 17 year old daughter, who was diagnosed with autistic spectrum disorder at age 6, saved my life by making her first ever phone call to a stranger to get me an ambulance. I was eventually diagnosed with a rare encephalopathy syndrome and again after a recurrence 11 months later.

The picture above was taken June 2016 after something went wrong in my system and for 10 hours i had a minute long seizure every 10 minutes. The medication I had been given hadnt stopped the seizures and my body reached a tipping point where first my lungs began to fail, hence the induced coma and life support, then over the next few days off the ventilator my liver reacted and for several days my neuro team had to consult with the liver team as my liver was failing rapidly. This is where the picture is from.

The funny thing about the picture is that the first time I had wound up in a coma on life support I had not believed my daughter when she had told me about it. I simply did not believe her so whej it happened the 2nd time she snapped a picture as proof. This time it was not neefed as unlike the forst time when I had taken my time coming round this time i woke up in itu with all of the monitors, tubes and lines still in place.....I also owed my daughter my life yet again after she raised the alarm having found me fitting in bef.

Luckily the liver is a wonderful organ and was able to heal over the following month....but it was the first time I realised i was not getting back to anywhere near normal physically no matter how hard i tried and just reinforced the itch that the Drs were missing something..
A different neurologist brought up the possibility of me having a genetic condition at the end of last year. He had studied my notes in depth and thought my original diagnosis was not quite right. Less than 2 months later it became probable after my 3rd attack in January and my 4th in June. The last attack triggered seizures that just affect my eyes.
on the 25th of July I was seen by a world leading expert in mitochondrial diseases. There is no unit in Scotland where I live so I had to travel to Newcastle but not complaining because the unit there is so great. There i was told by Prof. Sir Turnbull that the only thing that could be causing my issues was a multi system mitochondrial disease which has left lasting damage to my brain and the nerves/muscles, mainly in my legs.
They took samples from my now 20 year old daughter so we have to wait to see if she too is affected..
I may be frail and easily tired, and we have no idea how long my brain can withstand these attacks so my time is even more precious and I want to make memories for my daughter so that the latter years of my life are not all going to be memories of my 'being poorly'
There are so many things I still want to do but unfortunately being on benefits doesn't give you any spare for even the smallest bucket list item....and given my frailty my bucket list ideas are all small.
I would be more than appreciative for the smallest donation to help me make 'fun memories' for me to share with my daughter no matter what the future holds. Its been a long few years of fighting back from each attack and its only going to get harder. I will fight my battles but I won't win the war and thats just the terrible nature of these diseases.

Thank you.