The brave little girl in constant agony from Butterfly Syndrome
And the indomitable mum who nurses her round the clock and has raised £4.5million to find a cure
a death sentence attached. I looked at my beautiful little girl and knew I had to fight for her — and for other children like her.’
When Sharmila started to investigate the condition, she discovered there was no government funding for experts hunting for a cure. In fact, just £400,000 a year of private money was being channelled into research.
‘Scientific progress meant there was real hope of safe, effective treatment and possibly a cure — but only if money was poured into research,’ she says. ‘These children are doomed to such short lives that we had to act quickly.’
The result is a charity, Sohana Research Fund, devoted solely to raising money for research. Launched in 2010, the Fund has already brought in more than £4.5million through a mixture of charity dinners, concerts and sponsored events. It’s a staggering amount for one woman with zero experience of fundraising.
‘I started in the obvious place — the school playground,’ says Sharmila. ‘We had always tried to make light of Sohana’s condition. So much so that many people assumed she just suffered from severe eczema. And we have always encouraged her to be positive. So, when people see her happy, smiling face they don’t realise the trauma that goes on behind the scenes.
‘however, when I explained what she and other children with eB suffer every day, parents flocked to help.’
It undoubtedly helped that one of the dads at Sohana’s school is actor Damian Lewis, star of homeland and Wolf hall.
he is now a patron of the charity. But it’s Sharmila who has kept up the drive, endlessly coming up with new ways to raise money.
‘I could either sit at home dreaming of winning the Lottery or I could go out and make it happen,’ she says. ‘There was no choice.’
It’s hard to imagine how this extraordinary woman manages to juggle everything. But somehow she does.
her latest idea is to encourage families to invent games to play with water balloons. They then text the word ‘POP’ to 70300 to donate £3 to the Fund.
‘Teachers at one school lined up and let kids waterbomb them for 50p a go,’ says Sharmila. ‘It’s about having fun while raising money.’
The Fund has already paid for a trial in which ten children — including Sohana — were given infusions of donated bone marrow cells to repair the damage to their skin caused by the lack of a protein that holds the skin together. It proved hugely successful.
‘One three-year-old girl’s mum thought the trial finally helped her daughter walk,’ says Sharmila. ‘The treatment made the wounds heal better. For the first time, too, Sohana’s skin began to improve.’
Buoyed by this success, Sharmila is now determined to find a cure. Scientists are working on gene therapy treatments, with the aim of altering sufferers’ genes so that they start working properly, producing the missing protein.
‘We don’t have years to play with,’ says Sharmila. ‘There are thousands of children living every day in agony, their lives shortened because of this condition.
‘With the collective generosity of ordinary people, we can give them a pain-free future.’
Sharmila is far too modest to admit it, but her devotion to her daughter’s cause is transforming the treatment and outlook for thousands of children with eB.
She has proved how a mother’s love can shine a much-needed spotlight on a terrible disease.
‘The future really is looking a lot brighter for patients,’ says Professor John McGrath, head of the genetic skin disease group at King’s College London. ‘What Sharmila has done is nothing short of amazing.’
Few would disagree.