A BURNLEY family is appealing for people to support a charity concert to fund research into the rare, incurable illness from which their daughter suffers.
Andy and Alison Micklethwaite, of Highfield Avenue, hope that one day research funded by dba.uk will find a permanent cure for diamond blackfan anaemia, a condition affecting their four-year-old daughter Sophie.
Sophie, who has a brother Joel, six, and sister Abby, nine, is currently dependent on regular blood transfusions to keep her alive.
Diamond blackfan anaemia, which affects about 70 people in the UK, is a condition where bone marrow does not produce red blood cells properly. If untreated, it would lead to death.
In Sophie's case, the condition also affects the production of white blood cells which are essential for the body's immune system.
The condition gained national attention when the Whittaker family, in Sheffield, selected an embryo to use stem cells as a match for their son Charlie, who is a sufferer. The Micklethwaites have ruled out a similar option as they are not planning any more children.
Sophie was born by Caesarean section at Burnley General Hospital in February 1999 and spent the first month of her life in the neonatal intensive care unit.
She needed a blood transfusion during the first weeks of her life, but staff were not unduly concerned as they are common for premature babies.
She was eventually diagnosed after further transfusions when it became apparent she was not making blood properly.
Sophie now attends St Paul's C of E primary school in Nelson and her parents have paid tribute to her courage.
Alison, 36, said: "Sophie is a real fighter, a determined young lady.
"She is having transfusions every eight weeks and when one is due she gets badly anaemic, but she tries to hide it. The only difference is that she's pale and walks to school rather than runs. We don't know what the future holds, but we hope her condition can be managed, either with blood transfusions or steroids.
"A bone marrow transplant would be a last resort for us because they have a very high risk. I can understand why the Whittaker family wanted to take that route and went through the selection procedure with their child, but it's not for us."
Irish singer/songwriter Anthony John Clarke will perform at the Oaks Hotel in Reedley on February 20 to raise funds for the charity.
Call David Lewis on 01282 696041 for tickets, priced at £8.
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