Damian Lewis answers the Vanity Fair Proust Questionnaire.
Vanity Fair: “Which living person do you most admire?”
Damian Lewis: “Sohana Collins. A little girl I know who’s extremely brave.
Have you met Sohana yet?
Sohana Collins is a 16 year old young girl who was born with recessive dystrophic epidermolysis bullosa (RDEB or EB) which means she lacks the protein that holds her skin together. Kids with EB have extremely fragile skin that they are sometimes called “butterfly children.” Lots of activities we take for granted as easy routines in our daily lives are a struggle for them. Here is what Sohana says about her condition:
“Hi, I’m Sohana, and I have a horrible skin condition called Recessive Dystrophic Epidermolysis Bullosa. I try not to let it get in the way of the things I love doing, like drawing, writing and singing, but there are many things that I can’t do because of EB. There are things that you probably take for granted. Life with EB is painful, difficult, and can sometimes consume the good things, making life a daily battle.
It breaks my heart to know that there is so much money being spent on trivial, insignificant things, when there are children who know nothing but pain.
EB has affected every aspect of my life and I constantly fight to keep a smile on my face but often lose. You’ve probably only seen me smiling and happy but very often, now that I’m getting older, I feel more broken and helpless against this condition which, unless people do great things, will take my life. I’m not uncomfortable with saying that, I have acknowledged that that may be true, but I know that there is hope of defeating EB and we are so very close to doing just that.”
EB stinks. That is a fact. And EB Awareness Week is the perfect opportunity to raise awareness for this terrible skin condition!
Yes, we may not be researchers working to find a cure for this terrible skin condition, but we can still help the bravest girl Damian Lewis has ever known and all other butterfly kids out there in our own little ways… Believe me, there are many ways to help – JUST PICK ONE!
Do it like Damian and Fundraise / Donate to Cure EB!
Damian did his share several times taking the trading floor on GFI Charity Day raising money for the Fund.
I contributed to the fund by running a half-marathon and raising almost $6K back in 2015. It was a happy day!
But, hey, you do not need to run a half-marathon, and you do not even need to participate in an organized event – which is tricky anyway in the times of the on-going pandemic. Tiffany, who had registered for a 5K was not able to make it due to health reasons, did her 5K later on her own and fund-raised for the fund.
Oh, and Sharmila, Sohana’s mother and the true hero behind Cure EB, recently ran a marathon around London’s Regents Park – during Storm Alex, no less! – and raised money for EB research!
We cannot emphasize enough the importance of research to find a cure for EB. While experimental gene therapies are certainly giving hope to EB patients, we are still not there yet. The clock is ticking and we need more and more research. Thus, donating to the fund is obviously the most direct way to help and there is no small donation.
Since the Collins family covers the cost of events, fund-raising as well as the administration services for Cure EB, 100% of donations individuals make directly go into research projects. If you want to donate to Cure EB, but did not get a call from Damian, you can always securely donate at Cure EB’s Donate page 🙂
Do it like Damian and Get a Copy of Binky’s Time to Fly
“When Binky turns from caterpillar to butterfly, it’s a disaster! His wings won’t work and poor Binky can’t fly. Luckily, the spiders, silkworms and bees come to his aid. Together they work out how to give Binky a pair of bright, strong wings.”
Written by Sharmila Collins and illustrated by Carolina Rabel, Binky’s Time to Fly is a wonderful children’s book about empathy, hope, inclusion and helping others.
Do it like Damian and Spread the word!
Here is Damian sending a heartfelt message and raising EB awareness on behalf of Cure EB on BGC Charity Day.
Please please please spread the word! Visit Cure EB website for more information. Follow them on Twitter and Facebook. Please SHARE the information. And please HELP so we can beat Epidermolysis Bullosa, a disease “Hard to say, Hell to Live with!” together. Thank you!