A mother whose baby daughter died of mitochondrial disease said she is “absolutely delighted” after UK MPs voted to allow the creation of IVF babies with DNA from three different people to prevent serious inherited diseases.
Liz Curtis, whose eight-month-old daughter Lily died in April 2007, said the condition can be “really slow, progressive and painful” in children and legalising mitochondrial donation will create “healthy babies” not “designer babies”.
The 40-year-old from Warlingham in Surrey set up the Lily Foundation in search of a cure for the disease and works with a number of affected families.
She was in the House of Commons to watch as MPs voted by a majority of 254 for the UK to become the first country in the world to legalise the creation of IVF babies with DNA from a man and two women.
Curtis, who has two other daughters aged 10 and 11, said: “Just before it was extremely tense. Everyone was looking at each other because there were a number of speakers not in favour of the techniques.
“When they announced the vote there were a lot of cheers and claps and a lot of tears. We had a lot of families with us today and it means so much to them. It was incredible.
“I’m absolutely delighted. I’m relieved, overwhelmed and emotional.”
Describing the moment Lily was diagnosed, Curtis said: “I remember very clearly Lily was in intensive care, she was on a ventilator and the following day, in the morning, the consultant came round to see us and she congratulated us on our beautiful girl.
“Then she proceeded to tell us that she thought Lily had mitochondrial disease for which there was no cure and no treatment.
“We were given an A4 sheet about the disease which explained it in its basic form. Really there was not much more they could tell us. She had mitochondrial disease, it was an energy disorder and she was going to die.
“She was only given days to live as well, so we knew we didn’t have long. I didn’t want to waste what we had.”
This is not about changing eye colour, changing hair colour, changing personalities or anything like that. It’s... about healthy babies
Curtis hit back at criticism from opponents, including pro-life and Church groups, who believe the MPs’ vote marks the start of a slippery slope towards ‘designer’ babies.
“If you understand the science properly, you can see it’s no slippery slope,” she said.
“This is not about changing eye colour, changing hair colour, changing personalities or anything like that. It’s not about designer babies, this is about healthy babies.”
She added: “When you have a child, or when you’ve lost a child, the chances of you having another baby with the same condition and suffering in the same way are extremely high.
“This is offering hope where there is currently none.”