A couple fighting to be allowed to conceive a "designer" baby whose umbilical cord blood would be a life-saving match for their four-year-old son vowed yesterday they would not give up until every avenue was exhausted.
Raj and Shahana Hashmi spoke publicly for the first time of their struggle to save their son Zain, as the legal and ethical battle around the groundbreaking case moved into the court of appeal.
The couple, from Leeds, say they know of many other families in a similar position.
"His case won't be fought in vain," said Mrs Hashmi. "We'll take it to the highest level. We should never have had to go along this road to where we are today. We should have been given the treatment to make sure his suffering is ended."
Zain has thalassaemia, a rare blood disorder for which he needs frequent blood transfusions and constant medication. Without a bone-marrow transplant within two years, he faces an early death, but no donor with matching tissue has been found.
Mr and Mrs Hashmi's only hope is to have another baby, using advanced fertility techniques to produce a number of embryos and, hopefully, find one free of disease and compatible with their son.
"Pro-life" campaigners, who fear a future where babies are bred for spare parts, won a victory last December when the high court ruled that the Human Fertilisation and Embryology Authority was acting outside its legal powers in giving permission for the tissue-typing procedure to go ahead.
The HFEA takes the case to the appeal court today and will proceed to the House of Lords if it loses, because of the importance of the issues.
Mr and Mrs Hashmi say they have tried everything else. Zain is their fourth child. They had a fifth, Haris, in the hope of helping Zain.
"We were given the option [by doctors] of producing another child by natural conception. Haris is 100% healthy. He is 100% tissue match for his older brother, but not for Zain," said Mr Hashmi.
They tried again, six months later, but tests showed the baby would also suffer from thalassaemia. "We had to take the heart-breaking decision to terminate the pregnancy. We are against abortion. It is the most heart-rending decision we have ever made in our lives," said Mr Hashmi.
If they had another child by IVF selection who was a match for Zain, it would be as much loved as their others, said Mrs Hashmi. "We love Haris to bits," she said. "We love all our children. We're a very happy and very close family."
Before the high court challenge by the pro-life group Comment on Reproductive Ethics (Core), the Hashmis had undergone two fertilisation and screening attempts at the Care IVF centre in Nottingham.
The first time, none of the embryos was a tissue match for Zain. "We were quite gutted," said Mrs Hashmi. The couple intended to donate the healthy embryos among them, she said. On the second attempt, two embryos were matches, but the first stopped developing before it was transferred to the womb and the second did not implant.
Simon Fishel, their doctor at the centre, said the couple's chances were diminishing with Mrs Hashmi's increasing age. She will be 39 next week.
"It is a massive uphill struggle," he said. "At worst, there is a one in 12 chance of finding an appropriate embryo.
"Then Shahana is approaching reproductive maturity. It will be much more difficult to achieve a pregnancy even if we have an embryo."
Suzi Leather, who chairs the HFEA, said it still believed that the decision to allow the treatment to go ahead was a correct judgment. "It is important to recognise that what is at stake is not only the future of these families, but many other families that suffer from serious genetic conditions."
Josephine Quintavalle, of Core, said that designing a child to act as a tissue bank was not an ethical cure. The HFEA's decision "opened a floodgate whereby any subsequent form of designer baby could then be justified".
