Jon 's Exeter great west half marathon page
Jon Steed is raising money for The Lily Foundation
In memory of Jacob Bear Wright
Story
I’m running this half marathon to raise awareness of Mitochondrial Disease and to support The Lily Foundation who help families affected by the condition. My Cousin Bob and his wife Claire are one of those. 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.
I am going to do the running so please all I ask is for you could give what you can to help me help families my cousins, because no child should be told they have no future - we need a cure now!
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.
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.
I am going to do the running so please all I ask is for you could give what you can to help me help families my cousins, because no child should be told they have no future - we need a cure now!
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.