I once had 2 very beautiful little boys, sadly it was deemed by higher powers that they were never destined to stay with us. They both had a Mitochondrial Disease called Alpers. This disgusting disease robbed me of my dreams and them of their lives. Sidney was born 22nd May 2001, and developed normally until he was 12 weeks old when he had a 7 hour seizure. We could never have known what would happen that night or in the future. At the age of 4 months old he was diagnosed as terminally ill. and we brought him home to die. He was a little fighter and lived until he was 3 years old. He was blind, deaf, tube fed, had horrific seizures, he had trouble breathing, couldn't smile, talk, walk, or even sit. Sidney died peacefully on 14th December 2004. We were devastated. Freddie was born on 12th December 2006, he sadly developed the same disease at 14 weeks old & followed the same path as his brother and also died at 3 years old. Throughout this whole time ellenor were there to offer us all the help we needed to keep going. Nursing support and care, respite workers, play therapy for our daughter (who is not affected) counselling for both John and I, friendship and support from every member of their organization.
This walk is to help raise vital funds so that other families can be helped like ours was and I can pay it forward.
My kind friend Suzy has decided to run the Brighton half marathon in memory of my boys & help increase my total for the trek. ALL money goes to ellenor.org. thank you to any of you that donate via Suzy xx
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