Mary Gilbert's daughter suffered from a rare, inheritable
strain of mitochondrial disease – the type which can be prevented by the
“three-parent” technique
Opponents including religious groups opposed the amendment to the 2008 Human Fertilisation and Embryology Act, branding it as ‘the slippery slope’ towards designer babies.
But great-grandmother Mary Gilbert, 73, was waiting for the outcome with bated breath. She knows exactly how the controversial law change will bring hope to thousands.
Her daughter Beverley Neil suffered a lifetime of painful illnesses and died five years ago at 45 locked into her own body, unable to hear, see, talk or walk.
Years later – after she donated her organs for medical research – it was discovered that Beverley had suffered from a rare, inheritable strain of mitochondrial disease – the type which can be prevented by the “three-parent” technique.
Her daughter Destiny, 27, has tested negative – but she was shocked to hear the details of her mum’s condition because she had just discovered she was pregnant with her first child.
The family now faces an agonising waiting game to find out if Mary’s two-week-old great-granddaughter Acacia has inherited the disease.
She says: “It will take months before we know. It is like living with a ticking time bomb.”
If mitochondrial transfer had existed, Mary’s family would be spared this heartache. That’s why the former typist is adamant that the technique, developed by scientists at Newcastle University using animal tests, goes ahead with humans.
“Unless you have walked in some else’s shoes and lived with a child who is suffering from mitochondrial disease, then you cannot pass judgment,” she says.
More than one in every 6,500 babies is born each year with a serious disorder of their mitochondria – the tiny biological batteries that power most cells in the body and are passed on by mothers alone. Many die in infancy.
Mary says: “The risks are never going to go away and this technique is offering affected families hope for our future generations. It will stop us living in fear.”
The Church of England and the Roman Catholic Church are both opposed and see it as a radical step with profound implications.
They are calling for a delay and further study. Last weekend 50 Italian MPs wrote an open letter urging the House of Lords to reject the legislation, warning of “uncontrollable and unforeseen consequences” which could not be contained to the UK.
Mary wants to challenge them and was in the House of Commons earlier this month to watch MPs vote in the legislation.
She says: “All the researchers from Newcastle University got up and screamed with delight when we got the Yes vote.
This is an amazing technique. Once you contract this disease, there is no cure. You are doomed. Before this, I didn’t want any of my family to go through what Beverley went through. Now there is hope, I can look forward to future generations of my family.”
Mary, a mother of three, who lives in Clacton, Essex, with long-term partner John, 65, had to watch as her daughter, born a normal baby, struggled with multiple health issues until she became locked in her own body.
“One day when she was seven, she said she wasn’t able to see properly,” she recalls. “The doctors said something was wrong with her eyes but couldn’t explain what. That was the start of it.
"Everything in her body started to slowly shut down. With mitochondria the batteries of the body are diseased and start to run down pretty much from the moment you are conceived.”
Her thick glasses meant she was bullied at school but Beverley managed to stick up for herself.
“I never went up to the school. It’s sounds hard but I couldn’t mollycoddle her and it made her strong,” says Mary.
Then her hearing started to deteriorate.
“She hated wearing her hearing aids so we all got hoarse from shouting at her,” says Mary. Then she began to lose her balance.
But despite everything, Mary says that Beverley never complained. “She walked as well as she could. She was so determined to be normal and dismissed all these terrible things that were going on in her body.
She was very feisty and fought right through them. She was popular and had lots of friends and after studying hard at school, she got nine O-levels.”
Her first job as a clerical assistant started well but the firm had to let her go when her poor hearing led to mistakes.
Attractive and bubbly, she had no problem attracting men. But her health made it
difficult to maintain relationships. She became pregnant with Destiny and was devoted to her only child raising her alone.
She lived near her mum and stepdad in Southend and saw them several times a day. Mary says: “I’ve been a carer all my life. My mum was diagnosed with MS when she was 30 so I grew up caring for her and then my own children and my dad later in life. And then I was looking after Beverley.”
Mary’s pride in her daughter is evident as she says that wherever she went she made a good impression.
“I never laughed so much as I did with her. She was a one-off and amazing. Latterly her one outing of the week was getting her Giro cheque and people behind her in the queue would get impatient because she was slow getting her purse out. But she was determined to do it herself.
“When I told the staff at the Post Office that she had died, they all cried,” she recalls.
In her last three years Beverley lost her speech, then her sight and hearing. The mitochondria attacked her brain so she could no longer eat properly or sleep.
“She went from a pretty young woman to looking like an old lady of about 90 at the end,”says her mum.
Mary and Destiny had to get help at home with night carers.
“We could no longer cope. We went to A&E and said ‘Please help us’. They took her in and sent tests all over the country but still had no clue what was wrong. She was a shell and died after three months.”
After her death in July 2010 a coroner recorded a verdict of locked-in syndrome due to a progressive neurological disorder.
At that point her illness had not been properly diagnosed. Mary and John moved to Clacton to escape memories and Destiny too has moved away, to Reading, Berks.
Beverley had decided to give her organs to Addenbrooke’s Hospital in Cambridge for medical research. Biopsies were then sent to Newcastle University Hospital.
Finally last year they revealed it was a rare strain of mitochondrial disease – a new mutation, which is why the results took so long.
Mary and Destiny saw experts at the Hospital of Medicine in London, where specialists explained the hereditary disease in detail. But Destiny, a shop worker, was already expecting her first child.
She faced the choice of going ahead with the pregnancy or having invasive tests on her eggs that ran the risk of aborting the baby to find out if she was carrying the disease.
“I wasn’t prepared to take that risk,” explains Destiny, who gave birth to Acacia two weeks ago.
Blood has been taken from her umbilical cord and sent to Newcastle University, but the results will take several months to come back.
“Mum taught me so much about having to cope so I am trying to be positive and hope, whatever the outcome, we can live with it and find a way forward,” she says.
“And if it does come to it I know doctors will be able to give Acacia a brother or sister who doesn’t have these problems.
“Mum brightened every day with her sense of humour. We were so lucky to have her in our lives and I miss her desperately. I try and take her way of looking at life and that’s what keeps me going. I took her photo into the delivery room.”
Despite the concerns, she believes that a change in the law is the right thing to do.
“As long as this technique is put to the right use it can give hope to so many families and prevent so much heartache.”
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