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Closed 07/10/2023
The Lily Foundation

Team Grace are joining The Lily Foundation to help find a cure for mitochondrial Disease

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.
by 1897 supporters
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Closed on 07/10/2023
RCN 1122071

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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 no closer to a diagnosis & she 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 willing & 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.   

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.

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