Mum urges cure for rare disorder

Sohana Collins with Damian Lewis;
Sohana Collins with Damian Lewis;




A MOTHER whose daughter has a rare genetic skin condition has appealed to health chiefs to fund research into finding a cure.

Sohana Collins, 15, has epidermolysis bullosa (EB), where children have fragile skin like a butterfly and are constantly in pain from blisters and raw wounds.

In a moving interview, her mother Sharmila told Eastern Eye of the round-the-clock care her child needs and the charity she launched to help sufferers around the world.

The Sohana Research Fund hosted a family day on September 3 in east Lon­don to raise awareness of the disorder. Sohana is among around 8,000 people in Britain with EB.

Her mum, who has helped to raise £4.5 million through fund-raising events, said: “I would love for money to go to research. As a parent of a child with a genetic condition, if these research tools are invested in we will be giving something back. There is potential for treating some of these conditions.

“The other slight frustration I have is that money is spent on managing the conditions through the hospital, but I feel if you invested in research to treat and a cure, that seems like a better use of money generally.

“It’s an expensive condition to man­age, all of the dressings and treatment.”

She added: “The first gene therapy tri­al is underway. With more flexibility and funding, we would be able to get further.”

Sohana was diagnosed with EB at birth at Great Ormond Street Hospital in London. Her daily routine with her mum’s help involves having painkillers, picking blisters and dressing wounds, which takes around 90 minutes before going to school. This process is repeated in the evening for another two hours.

The condition also affects the canal which connects the throat to the stom­ach, so she can only have soft food which is blended.

Sharmila, a vet, said: “The pain is constant; it’s like having severe burn pain. She needs to be careful of every single mouthful. She loves flavour and taste and she struggles; it’s terrible to see.

“Toast, pizza, chips, she likes trying, but it’s very difficult. All the things that kids love eating is a challenge for her.”

She added: “I do put my arms around her but I can’t squeeze her. When she was a baby I could not throw her up in the air.

“She feels terribly loved, but we can’t be as free with that love. We cannot hold her close. I have lived in fear since the time she was born, worried about hurt­ing her, about doing the wrong thing.

“What it feels like is fear 24 hours a day. Fifteen years is a really long time to fear.”

Sohana has three sisters – Jacinda, 13, and ten-year-old twins Akhaila and Zuleikha.

Sharmila’s charity will host a Butter­fly Brunch club lunch in London in November and is also launching a But­terfly Brunch Club network to help raise funds.

She saw first-hand the impact the condition has on children in poorer nations after visiting Sri Lanka.

“I do literally dream of winning the EuroMillions because I know it would make more impact,” Sharmila ex­plained. “Not just for Sohana, but for so many families I am in touch with now from all over the world, families in In­dia and Sri Lanka.

“I have visited the children in Sri Lanka and it is absolutely dire. We have in the UK access to the NHS, and the dressings. I visited children who have absolutely nothing. Their parents are so desperate.

“It breaks my heart to think of the kids out there; hopefully one day we will be able to help but not without funding into research.”

  • To donate to the Sohana Research Fund, call 0207 6070611 or
  • visit