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Charlie Farley's Page SUDEP Awareness
I'm raising awareness of SUDEP - The Silent Killer for SUDEP Action because they are the only UK charity for SUDEP Awareness
In memory of: Charlie Burns
$24,989.81 raised of $15,082.39 target
89 donations
My Target:
$15,082.39
$24,989.81 raised so far
How to make a donation
Donate online at - www.justgiving.com/SUDEP-Awareness
By mobile internet Scan this code on your smartphone to go straight to Baz Jan Izzie Burns's page.
By text message to donate £10 Text CHAZ96 £10
to 70070
My story
Thanks for taking the time to visit my JustGiving page.
Charlie Patton Burns 04 Oct 01 ~ 11 Oct 11
Sudden Unexpected Death in Epilepsy (SUDEP) – The Silent Killer
Until the 07 Oct 11 Charlie was a perfectly fit and healthy 10 year old boy. Four days later on the 11 October 2011, a week after his 10 birthday our gorgeous little boy died.
Charlie had his first witnessed seizure on Friday 7 October 2011. His 15 year old sister, Isabella, was home from boarding school and was very frightened about the entire episode. The Paramedics arrived some 12 minutes later and took over until Charlie regained consciousness at about the 15 minute point. They incorrectly diagnosed as a Febrile Convulsion. How wrong they were!!
Over the weekend Charlie was fine but we were not happy with the diagnosis, on Monday 10 Oct, we took him to see our local GP. Charlie explained that he often woke up during the night gagging and needing a drink and quite often couldn’t feel the rest of his body. Our GP suggested that Charlie might be suffering with Nocturnal Epilepsy and referred him for an emergency appointment to see a Neurologist. The earliest available appointment was the 18 November 2011.
On Tuesday 11 Oct 11 we made a decision to visit our daughter as she had returned to her boarding school on the Sunday and was very concerned about Charlie. We took her out for tea in order to show her that Charlie was fine and that he has been referred him to see a specialist. We had a lovely evening and Isabella felt much better having seen Charlie, who was his normal self and we had such a happy and funny time together.
Charlie went to bed that evening at 8:45 pm, an hour later he had died. We were downstairs and heard nothing!
We have struggled over the last six months, as we had to wait for the initial Post-Mortem which indicated that no medical reason for Charlie’s death could be found. Lots of further tests needed to be carried out, including brain histology. We have recently had the Coroner’s Inquest which recorded Death from SUDEP. A silent Killer!
Charlie had 2 massive seizures, and the second one caused a bleed to the brain, and ultimately killed him. Nobody can tell us categorically that he only had two seizures, because if he had been having nocturnal seizures, he may have had others that went unwitnessed.
We had never heard of SUDEP before the death of our gorgeous little boy. More worrying still, is that many people in the medical profession have also never heard of SUDEP, and yet more people die per year as a result of SUDEP than to Cot Death. Everybody knows about Cot death, and it seems that very few people know about SUDEP. We just don’t understand why SUDEP seems to be hushed up and not openly and very publically acknowledged. We have since leaned that Charlie fell into a high risk category due to his age, gender and the fact that his seizures appeared to be nocturnal.
How does such a fun loving, full of life little boy suddenly drop down dead, and it goes unnoticed by the medical professionals?
Our mission in life is to make as many people as possible aware of this silent killer.
So please dig deep and donate now.
My gallery 6
My updates 18
Maidstone Girls Grammar School Year 11 - £203 for their Throw a Sponge @ the Teacher. Thank you very much.
Donations moved from last years Team site: Andrea Wooldridge £95.00 Charlotte Doyle £114.00 Angela Armstrong £250.00 RA YO's Course £382.00
Wow a cheque arrived today from Marks & Spencer (Hayle) in Cornwall for a fantastic £535.40. Thank you to everyone that donated towards this total.
Another £380.11 from Maidstone Girls Grammar School from the sales of their CD from RAG week. Thank you very much. xx
£50.00 Donation from Durrington Town Council - Thank you for your support. xx
My charity
SUDEP Action
Charity Registration No. 1050459
There are at least three epilepsy-related deaths a day in the UK. The majority are Sudden Unexpected Death in Epilepsy (SUDEP). We care for the bereaved and work with families and professionals to make change. Using research and awareness, we strive to get the answers that will save lives.
Donations 89
Hope you reach your target soon! xx
Donation by Pene Dean on 22/09/12
£10.00
Donation by Anonymous on 22/09/12
£2.00
+ £0.50 Gift Aid
Donation by Anonymous on 21/09/12
£5.00
+ £1.25 Gift Aid
Here's £5, that's £1 from each of the Soulsby Clan to help you reach your target. xxxxx
Donation by The Soulsby's on 21/09/12
£5.00
+ £1.25 Gift Aid
Donation by Emma Cooney on 21/09/12
£5.00
+ £1.25 Gift Aid
Big Hugs little man, love ya lots X
Donation by Eileen Robinson on 21/09/12
£5.00
+ £1.25 Gift Aid
Young Officers Course 197 completed a charity event and chose SUDEP as one of their charities. A huge thank you to you all.
Donation by Young Officers Course 197, 14 REGT RA on 21/09/12
£565.00
This money has been kindly donated to help raise much needed funds for SUDEP and all of Charlie's Angels who jumped on 11/08/2012 by SODEXO.
Donation by SODEXO LTD on 21/09/12
£300.00
Donation by Shona Brady on 11/08/12
£20.00
+ £5.00 Gift Aid
Donation by Anonymous on 27/07/12
£1.00
From all at Larkhill Primary School
Donation by Larkhill PTA on 28/06/12
£850.00
+ £212.50 Gift Aid
Donation by Paul Johnson on 07/06/12
£20.00
+ £5.00 Gift Aid
This money was raised at Milne Crescent's Jubilee Street Party. Thank you all so much for your kind donations. What a great day we all had.
Donation by Milne Crescent Residents and Friends on 06/06/12
£174.00
Anya Dilloway aged 6 raised this money by completeing a 6km sponsored walk to raise awareness of SUDEP for Charlie. Well done Anya.
Donation by Donna Dilloway on 06/06/12
£430.00
Very kindly donated for Charlie-Farley's Just Giving from Paddock Wood, Durrington - Jubilee Street Party. Thank you very much
Donation by Lucie Jones on 06/06/12
£213.00
Kindly donated by Nicky Avery. Upavon Support Unit. xx
Donation by Nicky Avery on 06/06/12
£20.00
For Charlie xx
Donation by Claire Lavery on 06/06/12
£10.00
+ £2.50 Gift Aid
Charlie burns a happy cheeky chappy who we all miss deeply. Janny baz and izzy who are amazing. Love to you all and god bless x
Donation by Lisa Trayhorn on 30/05/12
£20.00
+ £5.00 Gift Aid
For Charlie from Ann and John. xx
Donation by Ann Stacey on 13/05/12
£20.00
From the Moffitts xxxx
Donation by Julie Moffitt on 13/05/12
£20.00
+ £5.00 Gift Aid
Hope you reach your target, its for a very good cause. X
Donation by Josh Jones on 12/05/12
£10.00
xxxxx
Donation by C on 10/05/12
Antonia Price recommended your charity, tragic story we hope you reach your target and the money raises awareness and helps other families.
Donation by Smith Stone Waltes Ltd on 10/05/12
£50.00
+ £12.50 Gift Aid
Love The Scarffs xxxx
Donation by Rachel Scarff on 09/05/12
£7.00
+ £1.75 Gift Aid
Donation by Ann bates on 09/05/12
£5.00
Donation summary
- * Online donations$8,355.64
- Offline donations$16,555.74
- Text donations$78.43
- Total raised$24,989.81
- Gift Aid$1,202.44
* Charities pay a small fee for our service. Find out how much it is and what we do for it.
