Words by Smiley Team
A mum has vowed to run a marathon a month until she’s raised £1 million for research into a rare skin condition which affects her daughter.
Sharmila Collins has spent one Sunday a month for the past eight months running 26.2 miles around Regent’s Park in central London in support of her daughter Sohana, 18, who suffers from the painful genetic skin disorder Epidermolysis Bullosa (EB).
Sohana was born with the rare condition that causes dangerously fragile skin. Sharmila has devoted much of her life since then fighting to find a cure.
Sharmila, 52, says: “Sohana has never known a day without pain but she amazes us with her sunny, positive outlook on life.
“In the pandemic normal fundraising events like dinners or sponsored walks have been impossible so I had to think creatively about what I could do. I ran the virtual marathon in October and felt OK afterwards so I kept on doing marathons on my own.
“I hate running but I hate EB more. I intend to keep running monthly until I have raised £1million.”
Sharmila, who has four daughters, set up the charity Cure EB in 2011 to raise money to fund research. It is a race against time to find a cure that will save young people of Sohana’s age.
EB affects 500,000 people around the world. It is caused by a genetic mutation that makes a patient’s skin extremely fragile.
Any friction to the skin causes open wounds and blistering, and can lead to skin cancer. Daily management, including painful popping of blisters and bandaging, is required.
Cure EB is helping scientists make headway in vital research, and the charity has funded the first half of a clinical trial into gene-corrected skin grafts that have the potential to permanently heal damage.
Find out more about Cure EB on their website or follow them on Twitter. You can also sponsor Sharmila’s marathon effort on her fundraising page.
