My daughter, Georgie Elizabeth Barnes, passed away on 24th November 2017. Georgie's death was sudden and certainly unexpected. She's left a massive hole in the lives of many friends and family but as we mourn her passing I'd like to give something back to those that have helped Georgie and our family during her life.
My aim for this page is to raise money for 2 charities (Naomi House and Dravet Syndrome UK) that helped our family during Georgie's life and for her Preschool (Adventure PreSchool).
2 events officially entered and awaiting final confirmation of our place in the Great North Run in September
Now starting with a Brutal 10k on the 27th January 2018 , I'm aiming to compete in many events during the year (all of which will be posted on this page), with the help and company of my good friend Tim Ellams. Be it running, walking or trekking up Snowdon etc, each event will be pushing the boundaries of my(our) abilities and fitness levels as we rack up the miles, all for worthy causes and in the memory of the most beautiful and brave girl.
Georgie smiled through her struggles and I intend to honour that by doing the same. I'm not fit, I'm not in shape for a 10k but I am training (in the cold) and as determined as ever.
All funds received will be split equally between the 3 companies mentioned above, all in the name of Georgie Barnes.
This fundraising is not for a single event, it will be for many events over the course of the year.
Naomi House provided us with a place where we could get respite care. whilst we didn't use this often, Naomi House gave us a secure and safe place that we could be together as a family, where the kids could roam free and have fun - A holiday from home so to speak. When Georgie passed, Naomi House provided support for my immediate and extended family so we could all be together and say farewell in a calm, relaxed and familiar environment, something for which we will be eternally grateful. Their support during this process was exceptional.
Naomi House (https://www.naomihouse.org.uk/
) relies on charitable donations and fundraising to continue and expand on what they do and i'd like to raise money for them as they do a fantastic job.
Dravet Syndrome UK (https://www.dravet.org.uk
) gave us something we'd never have even considered at first, they gave us a chance to meet and make friends with other familes who had children (of all ages) with Dravet Syndrome. This enabled us to make long lasting friendships with like-minded people who get what it's like to raise a child with epilepsy. They have been very supportive and given us opportunities that are quite unique, that gave us insight into what our future might look like especially when trying to come to terms with the fact that your child has such a life limiting illness.
Every single penny donated to Dravet Syndrome UK goes towards raising awareness and understanding of Dravet syndrome and supporting individuals and families affected by Dravet syndrome. At this time, I can now say how valuable this is to the many families that need such support.
Unless Georgie was in our care, she was at Adventure Preschool. They took Georgie in and provided her with the 1-to-1 care she needed due to her condition. While plagued with many coughs and colds, she loved going to preschool and they loved having her there. Adventure Preschool created a room for Georgie that catered for some of her needs and gave her a safe environment in which she would flourish, this meant moving their office into a cupboard. Adventure Preschool are the unsung heroes as far as Georgie is concerned and for this reason I want to include them in my fundraising.
On the 7th October 2014, Georgie came into our world with a bang! An emergency C-Section due to a low heart rate. Lots of panic in a short period of time only for everything to turn out fine. At that point, while Mum slept off the General Anaesthetic Georgie was given to me to meet and hold for the first time. A perfect moment..
At 4 months old, our little angel suffered her first of many seizures. Our world had changed. Georgie was diagnosed with epilepsy that, after genetic testing, turned into a diagnosis of Dravet syndrome.
Dravet syndrome is a rare and severely disabling type of epilepsy presenting in infancy, sometimes called a catastrophic epilepsy. From month 4, Georgie endured many life threatening seizures, weekly hospital trips, lots of medication and physical disabilities that made life hard for her and her family. But, one thing always shone through, her smile, her personality and her determination.
Georgie's personality was one to be desired. She was the most welcoming child, gave the best cuddles and always made you feel happy. She was our inspiration.
In the previous 8 months before Georgie passed, she had enjoyed a sustained period of seizure control and this enabled her to enjoy life a bit more, she really developed in that time, life had improved for us all and our family life was the best it had been.
Sadly, on the 24th November 2017, we woke to find that Georgie has passed away in her sleep due to SUDEP.
Her sister, her mum and myself cannot put into words how this feels, devastated just doesn't cut it. Our family has suffered something no family should have to endure.
Please help me honour Georgie by donating to my cause. No donation is too small and all donations are gratefully received.
Thank you for reading.