Boy born to save his big sister: 'Saviour sibling' brings hope to his family and makes medical history

By Rachel Ellis
Last updated at 8:08 AM on 22nd December 2010

His Christmas present for his big sister has been months in the making. Toddler Max Matthews has given nine-year-old Megan the ultimate gift – a cure for the life-threatening disease she has suffered from since birth.

He became the first ‘saviour sibling’ to be created in the UK after doctors cultivated embryos that could provide stem cells to treat Megan’s condition.

Now, blood taken from 17-month-old Max’s umbilical cord and bone marrow has been successfully used in a transplant for Megan, who suffers from Fanconi anaemia and was not expected to live beyond seven years old.

Life saver: Nine-year-old Megan Matthews, who suffers with Fanconi anaemia, has been given hope by her younger brother Max who was born specifically to provide stem cells to help treat her condition

The £6,000 procedure that led to Max’s birth was paid for by the NHS as a last chance to help Megan.

The children’s mother Katie, 33, said: ‘It has been a tremendous rollercoaster of highs and lows but Megan is now making fantastic progress, better than we could have hoped for. For the first time we are looking forward to Christmas without worrying whether Megan will be well or not.’

While saviour siblings have been born before with the help of U.S. laboratories, this is the first time medics have carried out the entire process in the UK.

Opponents have argued that screening embryos and creating ‘designer’ babies to save a sibling’s life meddles with nature and risks turning children into commodities. But the Matthews family, from King’s Lynn, Norfolk, reject the criticism.

Mrs Matthews said: ‘There is no question that we have done the right thing. Max completed our family and gave his sister the chance of a normal life. It has triggered a really special bond between them – they are always together and it is lovely to see.’

Mrs Matthews and husband Andy, 40, a machine operator, decided to try to create a saviour sibling after Megan was diagnosed with Fanconi anaemia Type C when she was three. Her condition was so severe that doctors gave her only four years to live.

The disease predisposes sufferers to cancer, leukaemia and kidney problems and causes bone marrow failure, which means any infection can be life-threatening.

Happy families: Parents Katie and Andy Matthews from Kings Lynn - pictured with their children - were granted £6,000 by the NHS for the lifesaving treatment

Megan’s only chance of a cure was a bone marrow transplant, but checks on her older brother Stuart, 11, who is free of the disease, and the world bone marrow register, failed to find a match.

Mrs Matthews, a former nanny, said: ‘We always wanted three children. The only reason we didn’t have another child after Megan was that there was a one in four chance we could pass the disease on because both me and my husband are carriers.’

The couple underwent IVF, with the £6,000 bill met by the NHS, which decides funding in these circumstances on a case by case basis.

The embryos were screened and suitable ones selected using a process called Pre-Implantation Genetic Diagnosis – the first time it has been carried out on British soil. The result was Max, born on July 22 last year.

By the time stem cells harvested from Max’s umbilical cord and bone marrow were transplanted into his sister at Bristol Royal Hospital for Sick Children in July this year, every day was a battle for her.

Repeated infections meant she was in and out of hospital. She needed a blood platelet transfusion twice a week, full blood transfusions every two to three weeks and had to be wired up to a pump for 12 hours every night to try to clear her blood of high levels of iron.

Her mother said: ‘Megan always had a smile on her face and the way she dealt with the treatment was inspirational.’

But since the transplant, Megan has made astonishing progress. She was in hospital for just eight weeks – less than half the time doctors expected – and is doing so well she may be able to stop taking some of her medication early next year.

Megan said: ‘I feel so much better and can’t wait to do normal things. Soon I will be able to start swimming and dancing again and I have just been on my first sleepover.’

Mrs Matthews added: ‘Her life is completely different. She’ll be going back to school in February. In the time since the transplant, Megan would normally have had 40 platelet transplants and at least two or three infections which would have needed hospital treatment.

‘Now she doesn’t have to deal with any of that. The care we have received from the NHS has been amazing. We can’t thank everyone enough.’