I am running the Midnight Sun Marathon in Tromso, Norway in memory of our beautiful son Aidan.

Aidan was diagnosed with Mitochondrial disease (a non-treatable, non-curable disease) aged 19 months. Until then he was a happy healthy normal baby. However, after diagnosis of this rare disease through the Evelina Children's Hospital, our lives changed forever.

Aidan's muscles failed progressively as he had Mitochondrial DNA depletion Syndrome (TK2 gene). Aidan's brain was unaffected and being a clever, happy little boy, he was trapped in a body that was failing him and shutting his muscle groups down.

Sadly, the Doctors were right and he was given palliative care to the end of his life. After 5 long months in the Evelina Children's Hospital in London and the Royal Alex Children's hospital in Brighton, we were told he wouldn't make it back home and he sadly passed away in hospital on 1st March 2014 aged just 19 months.

I am running this arduous marathon to raise money for the Lily Foundation. The Lily Foundation are a charity supporting families of children stricken with mitochondrial (and other metabolic) disease and fund pioneering research into finding a cure. They were instrumental in giving my family and I timely diagnosis and invaluable support.

Those of you that know Lucy and I, will know how close to our hearts this charity is. Please sponsor me so that the Lily foundation can continue to support the scientists and doctors to make a breakthrough. You can read more about the Lily Foundation here: http://www.thelilyfoundation.org.uk and Aidan's story written by mummy and daddy can be found here: http://www.thelilyfoundation.org.uk/our-inspirations/aidan-pond/

Many thanks from the Pond Family

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