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Jane very sadly passed away surrounded by her family on 30th June 2014. She leaves behind her husband Mike, son Tom (30) and daughter Emma (28). Along with them are her mother Mary, her sister Sue and brothers Tim & Jon. Jane’s father Terry passed away in 2013. The family are comforted that they are now together. The piece below is written by her daughter Emma.

Mum was originally diagnosed with primary progressive multiple sclerosis back in 2004 on her 50th birthday. Mum was always the ‘sporty’ one, always on-the-go, always the first one on the dance floor at a party. So, when one day she was unable to place her foot on a bicycle pedal she started to wonder what was going on. It was my Dad who encouraged her to go and see a neurologist who months later informed her of the difficult news. However, Mum’s journey with multiple sclerosis never really fit the mould and after many years of investigations and scans, it was finally a skin biopsy that confirmed a diagnosis of Adult NCL.

Often people will start at the beginning of Mum’s life and move forwards, but I prefer to start at the end and work backwards. For me, it was at the end of her life that she became most beautiful in spite of the trials she faced. People always talk about memories of my mum as a vibrant woman, full of joy and the life and soul of the room. To me, this never changed. In mum’s darkest hour, she shone the brightest, setting a glowing example of what life is about and what true bravery and courage are. The disease that ravaged mum’s body never took her spirit and it never took her heart. It always astonished me how a heart that had experienced so much pain could carry on and seemingly get stronger. Every day, Mum got up and tried. She tried for me, for my brother Tom, for her Mum and Dad and for her family. Watching someone do this every day makes you thankful for the small things. Being able to move your hands; put one foot in front of the other; relax when you want to; get up when you want to; laugh; cry; say thank you; say I love you. It’s all these things that were gradually taken from Mum in the plight of her illness.

Yet, despite this, Mum tried. Without a voice, she used her eyes to communicate and I knew every time she looked at anyone she was ‘saying’ I love you. Whenever Mum saw someone she hadn’t seen in a while, her eyes would fight to say ‘hello’ and she would always without fail try to say thank you for anything that anyone did for her. ! Mum’s illness changed our lives. With the challenges it brought for Mum and for our family we grew stronger together and made the most of the remaining five years after her NCL diagnosis. Despite living in a nursing home, Mum came to both mine and my brother’s university graduations, she came to my wedding and to Tom’s first ever marathon. Mum inspired me to become an Occupational Therapist, working with others with disabilities and Tom turned his efforts to adventurous sports to fundraise for charity at any opportunity. Together this year we are running the London Marathon in Mum’s memory.

My brother and I are who we are because of Mum. Outsiders will look at our situation and think how much we helped Mum, but what is actually true is that she helped us. She helped us realise who we are and who we always want to be. We wouldn’t change a thing about our years with mum. We would of course take all mum’s pain and suffering away, but we wouldn’t change the experience for anything. What mum has shown and given us has transformed us forever and for that we count ourselves lucky. Lucky to have witnessed Mum’s life. Lucky to have learnt the true meaning and value of sacrifice. Mum has shown us to step back and look at the world with different eyes; eyes that appreciate true kindness and where to look for it; eyes that see integrity in others and eyes that know why forgiveness is so important. Each time Mum lost the ability to do something, it took pieces of us with her and conversely made us more whole; more whole in our ability to love her and to deeply understand what it means to love at all.

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