Islington girl with life-threatening condition to become a TV star
PUBLISHED: 12:11 15 November 2010 | UPDATED: 13:38 15 November 2010
A LITTLE girl with a life-threatening condition is to become a television star for the day.
Eight-year-old Sohana Collins, from Barnsbury, suffers from Recessive Dystrophic Epidermolysis Bullosa (RDEB) - a rare and painful condition where her skin and internal body linings blister at the slightest knock or rub, causing excruciating open wounds.
Despite being so young, Sohana has to cope with a three-hour daily routine of dressings and bandages to treat the sores and blisters that constantly form on her skin. As the condition attacks inside and outside the body, Sohana also has trouble eating.
But her mother, Sharmila Nikapota, said: “She copes with pain every single minute of every day and she still manages to be bubbly and happy. She’s so positive, she never complains – she thrives on new experiences and possibilities. She’s a wonderful little girl.”
Sohana will appear on a 10-minute BBC appeal on November 21 in an attempt to raise awareness and money for DebRA, a national charity that supports Epidermolysis Bullosa (EB) sufferers and their families.
“Sohana is very excited to be in the film – it was quite a fun experience and she quite enjoyed the cameras,” said her mother.
Mrs Nikapota has recently become very involved in fundraising for the charity. She believes it is the research funded by DebRA that will provide an effective treatment or cure for Sohana and others like her.
She said: “It’s a wonderful charity and there is so much hope. They are a lifeline to parents. We always look to DebRA nurses for any help or advice. They are always available and always lovely to talk to.”
Sohana, who lives with her parents and three sisters, loves to sing, dance and play the piano - and wants to become an opera singer. She also plays the recorder in the school orchestra and is an avid reader.
Mrs Nikapota describes EB as a cruel, nasty disease that needs more attention. There are currently at least 5,000 people in the UK living with EB - and there is no cure. RDEB, the most severe form of the disease, can lead to skin cancer.
Gareth Simpson, head of fundraising and communications for DebRA, said: “Sohana is a lovely bright child who has amazing spirit and the tenacity to pursue her dreams. I hope the viewers will help DebRA make a real difference to Sohana and others like her by making a donation.”
The Lifeline programme will be broadcast on BBC1 on Sunday, November 21, at 4.35pm and repeated on BBC2 on Thursday, November 25.
To make a donation, visit www.debra.org.uk or www.bbc.co.uk/lifeline after the programme has aired.
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