Charlie Whitaker cured by 'saviour sibling'

Charlie Whitaker, the boy who was once at the centre of a fierce debate over so-called 'saviour siblings', has been given the 'all-clear' by doctors. Six-year-old Charlie, who had Diamond Blackfan anaemia (DBA), received a transplant of cells taken from the umbilical cord of his brother James last year.

Last October, Ajay Vora, consultant haematologist at Sheffield Children's Hospital, confirmed that tests showed that Charlie's bone marrow looked 'entirely normal', and he was 'effectively cured. But at the time, Vora stressed that Charlie would need to be followed up to be '100 per cent certain' of the success. Before the transplant, Charlie required blood transfusions every three weeks, and drug infusions nearly every night.

The Whitaker family used PGD to conceive a child that would be an exact tissue match for Charlie, since no-one else in the family was a suitable bone marrow donor, and no other suitable donor could be found. Like bone marrow, the umbilical cord contains blood stem cells, which can be used in transplant operations to treat conditions that affect the white or red blood cells. But the Human Fertilisation and Embryology Authority (HFEA) refused the Whitakers permission to undergo the procedure in the UK, so the family travelled to the US for treatment. At the time, the HFEA said that PGD could only be authorised to avoid passing on a serious inherited illness to the child. Although some cases of DBA are caused by mutations in a known gene, the cause of Charlie's condition was unknown, so the Whitaker's wanted to use PGD solely to determine tissue type.

The HFEA later changed its policy on the use of PGD for tissue-typing only and it can now be authorised in certain cases. The first family to benefit from the policy change were the Fletchers, whose son Joshua also has DBA, when they were given permission to use the tissue typing procedure in the UK. Earlier this month, Jodie Fletcher, the first 'saviour sibling' conceived in the UK, was found to be a perfect genetic match for her three-year old brother, Joshua, who also suffers from DBA.