Nadia Coates

Nadia's London Marathon 2024

Fundraising for The Lily Foundation
£1,763
raised of £2,000 target
by 49 supporters
Event: London Marathon 2024, on 21 April 2024
Participants: Caroline Matthews
Please join Team Hope & help The Lily Foundation beat Mitochondrial Disease. Currently there is no cure, together we will change this. You can donate directly or take on your own challenge. Thank you

Story

I am running the London Marathon in my 40th birthday year to raise funds for The Lily Foundation, as part of Team Hope. 

The Lily Foundation was founded in Lily's memory, having lost her battle to Mitochondrial Disease at just eight months old. The charity aims to give hope, answers and support to the many other children and families that face the challenges of this disease today. Did you know every twenty minutes a child is born who will develop Mitochondrial Disease by the age of 16!

I knew very little about mitochondrial disease until I met my wonderful friend Caroline, and her endlessly inspiring and amazing daughter, Hope. Hope has mitochondrial disease, and despite all the challenges life throws at her she keeps showing us all what a brave, strong and determined girl she is. And she does it all with her gorgeous smile and personality always shining through.

I would be so grateful for any donations that can help support families living with mitochondrial disease and hopefully find a cure for Hope.

Please take the time to read my friend Caroline's story and below as her words mean so much more than anything I can say.

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. 




About the campaign

Please join Team Hope & help The Lily Foundation beat Mitochondrial Disease. Currently there is no cure, together we will change this. You can donate directly or take on your own challenge. Thank you

About the charity

The Lily Foundation

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The Lily Foundation funds research into Mitochondrial Disease and other metabolic disorders. It also raises important awareness and supports those families who are affected with metabolic disorders.

Donation summary

Total raised
£1,762.22
+ £414.06 Gift Aid
Online donations
£1,762.22
Offline donations
£0.00

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