BBC Lifeline Appeal for DEBRA - BBC
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- Опубликовано: 6 фев 2025
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Watch the BBC first on iPlayer 👉 bbc.in/iPlayer... www.justgiving.... Stormchaser Sam Smith presents an appeal on behalf of DEBRA, the UK's leading charity supporting the 5000 people in the UK who live with the painful genetic skin condition Epidermolysis Bullosa (EB). This genetic condion leaves her skin is so fragile, the slightest touch or rub can result in painful blisters and open wounds. Sam talks about life with the life limiting condition and how DEBRA have enabled her to live as full a life as possible - even taking in storm chasing.
The film features Jenna, who describes the value of having a DEBRA Community Support worker who helped her learn to care for her baby son Freddie and change his dressings, even when he is in pain. DEBRA also arranged a grant so the family could install carpet that wouldn't chafe Freddie's skin. Sam relates to 11-year-old Josh, who is determined not to let his skin condition rule his life. DEBRA has enabled Josh's family to go on holiday. The charity is appealing for support for its work giving direct help to people living with EB, and for the research it funds into a possible cure.
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Sadly, Sam passed away on November 6, 2016 from complications due to squamous cell carcinoma as a result of her EB. As her husband, I held her in my arms as she slipped away, finally free from pain and fear. She was the most amazing person I have ever had the privilege to know, and ask you all to remember her with me for the light of inspiration that she was.
im so sorry I loved her in stormchaser and the butterfly she taught me to keep going
so sorry, we all loved her strength
God bless you
I am so very sorry for the loss of your wife. She was a very inspirational kind hearted soul and I learned even at 50 so much about tornado's and life and not to give up from her. Both my Father and I battle skin cancer,and I also lost my Uncle to it. We keep on top of it, Hopefully one day all cancer will be wiped out. Again Sir, sorry for your loss.
Im sorry for your loss Bart.... I hope you are doing well! Just know that your wife has been a shining example of courage and perseverance to many!
This must be the most horrific condition known to human beings. I can't imagine the beyond excruciating level of pain and fear, every single moment of everyday of your life. Things that we all take for granted like giving a hug or lifting your child that would cause blisters and broken skin time and time again. The fear and certainly of more pain, more disfigurement and more imobility. I really hope that there will be a cure in the very near future. Thank you to all involved with the making of this film. I am deeply humbled by what you do.
the first time I watched sams documentary on tv it brought a tear to my eye, I like to check up on her every now and then in the media and even though I don't have much I donate every month to her charity. so go on do it
Very sad for baby and mother❤❤❤❤❤ wishing you well❤❤love
I wonder if Sam is still chasing tornados? She's an awesome and inspiring person
Nah she passed away.
Sounds like a fantastic charity! Thanks for helping us find out about it
What happened to the original version of this video that had something over 9000 views and several hundred likes? There are links out there trying to gain awareness and donations that point to the original upload (watch?v=PdlrPtwR4FM) which is now unwatchable. :-(
Este video...Foi d uma instituição d caridade...Em homenagem a alguém ch Debra.!!
Why did the doctors let Sam's fingers fuse? Isn't it routine to go in and prevent the fingers from fusing
This is painful ey.
:( and I thought bad excema and psoriasis was bad
was the charity named after someone called Debra
Im guessing its an acronym
CarbonKrazie I see
No it was just chosen there is no meaning behind it and I'm glad it's finally being more advertised I volunteered at the age 13 in Debra dorking up till the age of 15 when unfortunately the rent cost too much that it had to close. I still remember all the happy memories and hopefully someday it will be cured
Aleck Maccarone
thanks for the back story
sad