Sharmila Collins, who started Sohana Research Fund to raise funds for research that would help her daughter Sohana, but also many, many other children living with Recessive Dystrophic Epidermolysis Bullosa (EB for short) is featured in Guardian today.
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| Sohana & Sharmila Collins, copyright: Guardian |
Below is a couple of excerpts from the Guardian article by Joanna Moorhead and you can read the full article here.
My Fight to Save My Daughter's Skin
Guardian, Family section, November 22, 2014
By Joanna Moorhead
Sohana was born with Recessive Dystrophic Epidermolysis Bullosa – EB for short – a condition that leaves her covered in ugly red blotches and huge blisters; it is a genetic condition in which the skin blisters and peels off at the slightest brush or knock. So fragile are those who have EB that they are sometimes called “butterfly children.”
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Sharmila, 45, started to look into how much research was being done into EB. A veterinary surgeon by training, from the earliest days of Sohana’s life she had looked up academic papers and investigated the scientific work around the world that could help children like her daughter: now, she decided to find out exactly how much money was being channelled into research into EB in Britain. “I discovered it was about £400,000 a year,” she says. “I was utterly shocked: in medical research terms, that is virtually nothing.”
Far from being a blow, the realisation became a catalyst for change. “I had to start fundraising so we can fight this condition and do something for Sohana and other children who have EB,” says Sharmila.
She had never told the other parents at her children’s school how serious Sohana’s condition was: now, she decided to do that, in the hope that they would back her efforts. “They were behind me 100%,” she says. “Everyone wanted to know what they could do to help.”
Among their number was the actor Damian Lewis, of Homeland fame, who pledged to help in any way he could (he has since made a short film about Sohana’s daily life, which can be seen on her website).
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| source: sohanaresearchfund.org |
That was four years ago: today, the Sohana Research Fund – Lewis is a patron – has raised more than £2.5m and funded a trial in which 10 children were given infusions of donated bone marrow cells in the hope that they would help repair the damage to their skin, which is caused by the lack of a protein that holds the skin together.
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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.”
We thank Sharmila Collins, a brave and determined mother that started this project, and the lovely Sohana for the wonderful and inspiring work they have done. Please visit Sohana Research Fund website here for more information.
The Fund is starting a FUN tongue twister challenge today! In Sohana's words "Please help me laugh by taking on the EB tongue twister challenge here and help the researchers stop the pain of EB!"
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| source: sohanaresearchfund.org |
Finally, we thank Damian Lewis for being a part of this inspiration! Please see the video Damian made for Sohana Research Fund in which he invites us to give to the cause. Please give.
Happy Weekend!
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