(UKPA) – Sep 1, 2009
When it was suggested that her very sick daughter have a new bone marrow transplant procedure at Great Ormond Street Hospital (GOSH), Louise Moseley said she was just relieved that Ffion was not the first.
“I would have been more sceptical if she had been the first but other parents had been brave enough to say yes. She was so poorly we just thought that it had to be done.”
Ffion was just three weeks old when she developed skin problems that were so serious that she was regularly in hospital.
It was initially thought to be dermatitis but when Ffion was transferred to the Singleton Hospital in Swansea it was suggested the condition was likely to be caused by a problem with her immune system.
Ffion was three months old when she was diagnosed with the genetic condition Omenn Syndrome, a severe combined immunodeficiency (Scid), and admitted to GOSH.
“All I heard was ‘she needs a bone marrow transplant. It’s a fatal condition’,” said Mrs Moseley, 30, of Pembroke Dock, Dyfed. “It was a complete shock. I’d never heard of it because it’s such a rare condition.”
Too sick to have the chemotherapy needed for a conventional transplant, Ffion was given the new procedure using antibodies to prepare her for the transplant which she had aged five months.
Although she suffered complications afterwards, including Graft Versus Host Disease (GVHD) where the body attacks the transplanted tissue, Ffion was well enough to go home three months later and now only needs an annual check up.
“Not only did the BMT save Ffion, but her skin is now beautiful. You’d never know she is the same child that was so desperately ill in the past,” Mrs Moseley said.