Bettws Hall

Bettws Hall Supporting Team Grace

Fundraising for The Lily Foundation
£19,226
raised of £3,000 target
Donations cannot currently be made to this page
Event: Autumn Wolf Run, from 1 September 2018 to 2 September 2018
Participants: Team Bettws = Gwyn & Ann, Will, Amy's x 3, Richard, James, Jack, Lord Sutton, Imogen, Jonathan, Georgina, Nigel W, Sue, Beth & Rhona
When Grace's family we told she had Mito, they were devastated to find there was no treatment or cure. In her memory they want to change this for other families. Please join Team Grace to help them.

Story

The Lily Foundation was brought to our attention through the struggles of a close friend to Richard Crofts, when they lost their little girl Grace. Please read the story below to see why we have collectively made the choice as an office to unite and to try and stop this happening to other families....

Friday 23rd of March 2018 began in a normal way, little did we know it was going to turn out to be the start of a terrifying time.
At 8am my usual loud, demanding & slightly crazy daughter got very distressed and started being sick & by lunchtime she was having small seizures. We went to the Horton General Hospital & immediately Grace started baffling medical professionals. 

At 11pm on Saturday night we were no closer to a diagnosis & she was moved to the John Radcliffe in Oxford. A MRI showed our baby girl had a stroke at just 3 years old!

On Friday the 6th April things went from bad to worse.
Grace had another stroke which left her with a uncontrollable seizures. She was put into an induced coma on a ventilator.

On Friday 20th April her consultants delivered the heart-breaking news that Grace had mitochondrial disease & there was nothing that could be done for her. Her mito was very advanced & she was unlikely to cope very well off the ventilator, if at all.

On Saturday 21st April, Grace's monitors were spiking & her seizures returned so we decided, with the advice of the medical professionals that it was only fair to her that we allow her to come off the ventilator. We knew she would not wake, we knew we were only going to have at
most a couple of days with her, but we still spent that last bit of time
illing & praying she would get better. She didn’t. 

On Monday 23rd April at 13:02 Grace passed away just a month after first falling ill.  Whilst we are hurting in ways I never thought possible right now & we are probably still in some form of shock, we will be eternally grateful to all of the staff at the John Radcliffe Hospital in Oxford. They fought as hard as we did for my baby girl & she received the highest level of care right to the end. 

We want to raise as much money as we can in memory of our beautiful girl to aid research into this disease & hopefully one day they can find some treatment or a cure.

The Lily Foundation was founded in memory of another little girl, Lily, 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! 

There is no cure for this disease which is for many, debilitating and life limiting.Please stand with us and fight Mitochondrial Disease and fight for hope.

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About the campaign

When Grace's family we told she had Mito, they were devastated to find there was no treatment or cure. In her memory they want to change this for other families. Please join Team Grace to help them.

About the charity

The Lily Foundation

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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
£19,225.56
+ £1,174.25 Gift Aid
Online donations
£7,722.00
Offline donations
£11,503.56

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