Hope Olivia aka Honkey was diagnosed with 'catastrophic brain damage' at 21 weeks into our pregnancy. It wasn't until she was 3 years old she was diagnosed with a mitochondrial disease. Though the prognosis is bleak- Hope hasn't read the literature, and is living life to the full- in her own way.Hope has pyruvate dehydrogenase complex deficiency . Her metabolism doesn't work like it's supposed to and she struggles to make energy - energy is required not just for activity, but for growth and cell growth and renewal. Without this, damage is caused to organs (her brain) and systems in the body don't function as they should.

The ketogenic diet has been life changing for Hope and us as a family. Hope used to be much more poorly , because her body couldn't process the foods we were giving her. Now she's on a very strict, high fat diet with minimal amounts of protein and carbohydrate- so now her body runs on a different fuel; ketones . Thanks to the diet Hope as been seizure free since November 2012 and hospital stays have thankfully been less frequent.More importantly, Hope loves her family, animals , stories and nursery rhymes. She would sit and read books all day long- her favourites are animal books. She enjoys rolling around on the floor, and going out for walks or Runs in her buggy- proving she has her iPod and a trusty singing teddy with her (she doesn't leave home without either).

There is no cure for mitochondrial disease, and currently there's not any research into Hope's condition in the UK. We're friends with some other children in the UK (there are only a few we know of) and together we've decided we want to do something -so In the future this page will become a hub of activity and challenges to raise money towards research.

You can find out more about Hope on her Facebook page

https://www.facebook.com/hopeinourhearts

Thanks for reading - Caroline (Hope's Mum)