Joanne Steed

Jo, Elly & Sam

Fundraising for The Lily Foundation
£602
raised of £50 target
by 13 supporters
Donations cannot currently be made to this page
Event: Torbay Half marathon 2017, on 25 June 2017
In memory of Jacob Wright
The Lily Foundation

Verified by JustGiving

RCN 1122071
We fund research & raise awareness to support the families affected by Mito

Story

Myself, Elly Stevens and Sam Beer are running our first half marathon to raise awareness of Mitochondrial Disease and to support The Lily Foundation who help families affected by the condition. 

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.

Our Cousin Bob and his wife Claire are a family affected by this awful disease. The whole of our family were devastated in 2012 when we were told their beautiful little boy Jacob has this disease and was going to be taken from us all too soon. He passed away at just 16 months. His short life and all the things he has inspired people to do in his memory made me want to do something to make a difference. Here is his story:

Jacob was Claire and Bob's first child. They had so many hopes and dreams for their little boy but those dreams were never to be.
At 8 months Jacob started having terrible seizures day and night that could not be controlled. He lost all of his skills even his smile. At 14 months they were told he had Mitochondrial Disease. A genetic condition with no treatment or cure. Mitochondria are the bits of our cells that act like a battery. They provide the energy for each cell to do their job. In people with Mitochondrial Disease those batteries don’t work properly and eventually stop working all together. They were told he would probably not reach his 2nd Birthday. 2 months later he died in his mummy's arms with his daddy holding his hand.

Every 20 minutes a child his born who will develop the disease by the age of 16. There is still no treatment and no cure and it is always life limiting. That simply isn't right. The Lily Foundation want to change that. They support families and fund vital research and fight for a cure. They want to stop families like ours going through the pain we have gone through and parents like Bob and Claire having the emptiness they will always have now Jacob is gone.

We are going to do the running so please all we ask is if you could give what you can to help families like our cousins, because no child should be told they have no future - we need a cure now!

About the charity

The Lily Foundation

Verified by JustGiving

RCN 1122071
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
£601.44
+ £33.75 Gift Aid
Online donations
£153.44
Offline donations
£448.00

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