The living room of Vicky Holliday and her partner Keith Newell’s home, in a quiet cul-de-sac in High Wycombe, has all the telltale signs of new parenthood: multicoloured baby mat, cuddly toys, photos of the proud parents with their newborn baby. But, as they breezily set about feeding 10-month-old Jessica - a complicated procedure involving first testing her stomach contents to ensure the gastric tube through her nose is in the right place - the couple describe just how much every moment with their daughter is another to cherish.
In June, Holliday and Newell were told that Jessica has Leigh’s syndrome, an inherited neurological disorder that was already causing lesions in her brain. She will never walk, talk, or crawl, the doctors said.
As they struggled to absorb what they were being told, Newell asked how it might affect her in later years. There was a silence. The disease was “severely life-limiting”, the doctors told them. There is no cure, so Jessica will die in infanthood, potentially quite quickly if she develops breathing problems. “We don’t know how long we’ll have with her,” said Holliday, 38, a management consultant.
For now, the couple’s focus is on alleviating their daughter’s symptoms and making her short life as enjoyable as possible. But they are hoping that draft regulations allowing doctors to create “three-person embryos” get the go-ahead this week, so that they will not have to take the chance that a second baby would be affected by the same debilitating condition as Jessica.
“Keith and I always wanted to have a family,” said Holliday. “If we lose Jessica, I can’t imagine just being on our own.”
The experimental procedure, known as mitochondrial transfer, offers hope to families who are affected by conditions that can be caused by faulty DNA being passed from mother to child.
The procedure replaces faulty genetic material found in mitochondria, the tiny “batteries” that power cells, with healthy DNA taken from a donor woman.
Draft regulations on the technique will be discussed by MPs on Wednesday.
Mitochondrial transfer is controversial because the healthy donor DNA is inserted into IVF embryos. That means the genetic material is not only carried by the child that grows from the embryo, but is passed down the female line to all future generations. So far there is no evidence that the procedure is dangerous, but unknown side-effects could emerge and affect all of the generations that carry the donor DNA.
Doug Turnbull, professor of neurology and director of the Wellcome Trust’s Centre for Mitochondrial Research at Newcastle University, who treats patients with mitochondrial disease, said he is in the “difficult position” of knowing about the treatment but not being able to offer it to families. Turnbull said: “Patients like Vicky are a very good example of why it should not be delayed. If you are 38 and you want to have it then the clock is ticking.”
Turnbull said that the treatment has been around since 2008 and there is little reason to delay it further.
“There have been three scientific reviews and they say they can find no reason that it isn’t safe.”
One in 6,500 children each year are born with a serious mitochondrial disorder. Many of the conditions affect power-hungry organs such as the brain, muscles and heart, and they often worsen with age. Many children with the illnesses are disabled and die young.
Turnbull, who will appear before MPs on Wednesday, said he hopes that the select committee will push for the new regulations to come before parliament this year. If they do, the Human Fertilisation and Embryology Authority will put in place procedures to license clinics who want to carry out the treatment. Turnbull hopes to apply for a licence some time next year.
Newell and Holliday hope this will not come too late for them. Leigh’s syndrome, is caused by a mutation in one of 30 different genes, and because of the uncertainty of how Jessica inherited the condition, and the possibility that it was due to Holliday being a carrier of faulty mitochondrial DNA, doctors cannot predict whether a second baby would inherit the same condition.
“If we went through the natural route, they could never tell us if another baby would be affected,” said Newell, 42, director of High Wycome Cricket Club. “They could never say that another baby wouldn’t be.”
Holliday is currently undergoing tests to find out if her mitochondrial DNA is faulty or whether the disease occurred via another route.
The couple could opt for a donor egg, but Holliday said that she is keen to have her own genetic child. “I want to be able to look at her and say, does she look like me, has she got the same traits as me. That’s important to me.”
She has little time for those who say not enough is known about mitochondrial transfer. “To see someone like Jessica sitting there,” she said. ‘It’s a no brainer. We absolutely have to stop the progress of this disease.”
“There’s no way that Keith and I should be saying: ‘Shall we take a speculative punt and have another child with mitochondrial disease?’ People shouldn’t have to make that decision.”
“When you see the suffering, when you see a child that might have developmental issues. Look at Jessica, she has only months to live and she is brain damaged.”
In a few short months, the couple have become experts in Leigh’s disease and genetics.
They have learned, for instance, that the smiles from their daughter, so rare that Newell describes them as “gold dust” could be infrequent because her body is conserving energy.
They feel that ignorance about genetics has led to objections from some quarters. Holliday said the term “three-parent baby” that is sometimes used to describe the technique for avoiding the mitochondrial mutation is “hugely exaggerated”.
“A child would carry our genetic DNA that gives it all of our characteristics. To me, it would feel like having a complete blood transfusion or having an organ replaced.”
“[The term] is just incorrect,” she added. “What people don’t understand is that the law, if it is going to be changed, is not for nuclear DNA, but for mitochondrial DNA. All of the child’s characteristics are contained in nuclear DNA.”