Team Grace
Friday 23rd 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 and slightly crazy daughter got very distressed and started being sick and by lunchtime she was having small seizures. We went to the Horton General Hospital and immediately Grace started baffling the medical professionals. At 11pm on Saturday night we were no closer to a diagnosis and she moved to the John Radcliffe in Oxford. An MRI showed our baby girl had had a stroke at just 3 years old!
Two weeks later, things went from bad to worse. Grace had another stroke which left her with uncontrollable seizures. She was put into an induced coma on a ventilator. On Friday 20th April, her consultants delivered the heartbreaking news that Grace had mitochondrial disease and there was nothing that could be done for her. Her mito was very advanced and she was unlikely to cope very well off the ventilator, if at all.
After a couple more weeks, Grace’s monitors were spiking and 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 wouldn’t 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 and 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’re hurting in ways I never thought possible right now, and we’re probably still in some form of shock, we’ll be eternally grateful to all the staff at the John Radcliffe Hospital in Oxford. They fought as hard as we did for my baby girl and 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 and hopefully one day they can find some treatment or a cure.
Grace’s family would love you to support The Lily Foundation’s work. Whether it’s a one-off gift or a regular contribution, simply follow the link below to visit their JustGiving page and join the hundreds of others who have already made a difference.
Your donation will help fund groundbreaking research into mitochondrial disease, raise vital awareness and support hundreds of patients and families affected by this little-known but incurable condition.
Since 2007, The Lily Foundation have already raised over £11 million. With your help, we can continue to fight mito and find hope for everyone affected.
