Play Like Damian, Help Sohana Beat EB with Fun and Laughter!

Damian Lewis is a proud patron of the Sohana Research Fund.

Sharmila Collins started Sohana Research Fund to raise awareness and funds that would help her daughter Sohana, but also other children living with the painful skin condition Recessive Dystrophic Epidermolysis Bullosa (RDEB). These children are fragile to an extent that they are sometimes called the “butterfly children.”

I found out about the Fund thanks to a video Damian did last year to invite all to help out. Sohana’s story and her parents’ strength and determination moved me so much that I have been a follower and a supporter since.

Here is a quick look at Sohana’s life and hopes featured in a Guardian article in November 2014.

“It’s easy to see what drives Sharmila. Sohana is a delightful child: though she is swathed in bandages and the raw, red patches on her face are all too evident, it’s clear that she makes the most of her life, enjoying secondary school (which she attends with a full-time carer, as even carrying a bag on her shoulder would cause injury) and, despite her damaged hands, playing the piano. Just like her mother, she refuses to accept that her situation will stay the same for ever. “I’ve never had a day without pain. I’ve never really had an hour without pain,” she says. “It’s not fair and it’s not easy, especially when I see other children running around and playing normally. I think how much I’d like to do that too and, one day, I really hope I might.”

Sohana started a FUN tongue twister challenge late November and told everyone: “Please help me laugh by taking on the #EB tongue twister challenge here and help the researchers stop the pain of EB!” Can you imagine a better way to raise awareness and funds to beat a disease than through fun and laughter? I CAN’T.

Damian Lewis and Helen McCrory kickstarted the challenge with their brilliant and funny tongue twisters!