THE parents of a little boy suffering from a horrific incurable skin condition have spoken of their heartache.
Ryan Cottrell, eight, has lived every day of his life battling through the pain of Epidermolysis Bullosa (EB), a condition where internal linings and chunks of skin blister and rip away from the body.
In the UK it afflicts just one person in 20,000 and is desperately painful for a sufferer's family to watch.
Ryan's dad Shaun, 34, said from the family home in Carter Street, Accrington: "There will never be an improvement. Basically, Ryan's skin is deteriorating all the time. There is nothing we can do and we have to come to terms with that every day. We have to live with the thought of him never getting better."
EB leaves sufferers highly vulnerable to the slightest knock, which leaves severe, long-lasting mutilation and increases disability. Because the immune system is weakened, many sufferers contract cancer.
Ryan's condition means he will never be able to do what other little boys do.
Mum Amanda Dodds, 30, said: "Obviously he has to be very careful at school and can't really do many sports. He can play with a soft ball but anything involving friction isn't possible. When he gets home he is so tired he usually relaxes by watching Basil Brush and then goes to sleep."
Ryan, who attends Woodnook Primary School in Accrington, where he has a special carer, has to withstand a daily concoction of medication to protect his body. But even the cocktail of medicines and pills doesn't stop his skin from blistering, which has to be cut with scissors to drain the fluid.
Ryan, who has to wear protective bandages under his clothes, travels to Great Ormond Street Hospital in London twice a year for a comprehensive check-up. It is a draining existence for his parents.
Shaun has just quit his job as a computer engineer to look after Ryan. He said: "I've worked since Ryan was born and Amanda looked after him full-time, so it has been more distressing for her. We're going to be home together now to take care of Ryan. He has become quiet and withdrawn. He's at an age where he is feeling it a bit more."
More than £1,000 was raised for Ryan by well-wishers at a fund-raising party last week.
Dozens went along to Platt's Social Club on Blackburn Road, Accrington, for a soul and Motown night, held to raise sufficent money to send Ryan and his family, including sister Amy, four, on holiday.
"People have been really kind," said Amanda. "We're waiting to see where Ryan would like to go to. We think his dream destination is EuroDisney or Legoland."
Published 10 September 2004
