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I was 10/11 years old when my Mum was diganosed with Neurofibromatosis Type 2 (NF2 for short).  She had 2 tumours on her hearing nerves and the operation to remove meant she lost her hearing entirely.  It was a big adjustment for our family.

I was in my early teens when we found out that my brother and I also had the condition - the 50% chance of her passing it to us had not been in our favour.

My first tumour was found during an MRI scan when I was 19.  More have been found since, but I have been quite lucky with my symptoms.  I lost my hearing in the left side and underwent an operation to remove the tumour on that side in March 2014.  I had a hearing implant fitted at the same time which is a great help to me.

My Mum has been far less fortunate than me.  She had to endure a number of issues apart from her complete deafness.  Her mobility and balance were poor, she had dry eyes and no saliva - meaning her eyesight was poor and she lost all her teeth, she had epilepsy and suffered constant headaches.

Due to her poor balance and mobility, Mum fell one day and broke her elbow.  We are not sure why, but Mum didn't tell anyone for weeks, until the pain became unbearable.  Due to leaving the injury to heal on it's own, a major operation was needed to fix it.  Mum was left immobile for months.  Because of her NF2, her speech deteriorated greatly, understanding what she was saying became difficult.  Mum was unable to communicate that she was having difficulty with her chest.

On the morning of Sunday 6th January 2013, Mum passed away quietly in her sleep.  The cause was found to be pneumonia with her NF2 being recorded as a secondary cause.

My Aunt and I are trekking on the Great Wall of China in September 2015, in memory of my wonderful mother, and Susan's sister; to raise funds for the organisation that helps those with NF and to help find what we are all looking for - a cure.