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Charlie Whitaker cured by 'saviour sibling'

22 August 2005
By BioNews
Appeared in BioNews 322

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.

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The Daily Mirror |  16 August 2005
24 July 2009 - by Nisha Satkunarajah 
'My Sister's Keeper' is based on a book by the author Jodi Picoult. The youngest daughter of the Fitzgerald family, Anna (Abigail Breslin), decides to sue her parents for the ‘medical emancipation’ of her own body. Having been conceived through IVF and the resulting embryo tissue typed to ensure it was a match for her sick existing sibling, Anna was born for the primary reason of keeping her older sister, Kate (Sofia Vassilieva), a leukaemia patient, alive....
8 August 2005 - by Dr Jess Buxton and Dr Kirsty Horsey 
In response to comments made in the BioNews survey last year and some correspondence from subscribers, this week's commentary is all about BioNews' Commentaries. BioNews is published by Progress Educational Trust, a small UK charity providing public information and debate on issues in assisted reproduction, embryo research and genetics. The...
21 October 2004 - by BioNews 
Charlie Whitaker, the boy at the centre of a fierce debate over so-called 'saviour siblings', is 'effectively cured' of his rare blood condition. Six-year-old Charlie, who has Diamond Blackfan anaemia (DBA), received a transplant of cells taken from the umbilical cord of his brother James earlier this year. Three months...
6 September 2004 - by BioNews 
The licensing committee of the UK's Human Fertilisation and Embryology Authority (HFEA) met today to rule whether a couple can create a 'saviour sibling' to treat their seriously ill two-year-old son. It has decided that Joe and Julie Fletcher, from Northern Ireland, will be allowed to try to conceive an...
28 July 2004 - by BioNews 
Charlie Whitaker, the boy at the centre of one of the fiercest debates over so-called 'saviour siblings' has had a stem cell transplant and is 'on the road to recovery', say his parents. Jayson and Michelle Whitaker made the decision last December to go ahead with the treatment, made possible...
22 July 2004 - by BioNews 
The Human Fertilisation and Embryology Authority (HFEA) has decided that no distinction should be between the cases of the Hashmi family and the Whitaker family: that preimplantation genetic diagnosis (PGD) for the sole purpose of tissue typing should be allowed. The news gives hope to many families who may now...
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