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Sunderland mum who lost seven children to rare condition backs new move to legalise controversial IVF technique

LAST picture taken of Edward Bernardi  who died 2011 as he celebrated his 21st birthday with parents Sharon and Neil.

LAST picture taken of Edward Bernardi who died 2011 as he celebrated his 21st birthday with parents Sharon and Neil.

A SUNDERLAND mum said plans to legalise babies born with three genetic parents would change families’ lives forever.

The UK could become the first country in the world to allow the controversial IVF technique, which has moved a step closer after health officials said they would press ahead with creating new regulations to allow the move.

A consultation was launched about the initiative, which would be used to prevent devastating inherited diseases, earlier this year.

In its response, the Department of Health said that plans to legalise use of these techniques to prevent mothers passing on serious mitochondrial diseases to their children are to progress.

Fertility rules were changed by the Government in February, which paved the way for Britain becoming the first country in the world to allow mitochondrial replacement (MR) 
therapy.

Mum Sharon Bernardi, of Springwell, lost seven children to mitochondrial disease – six within a few hours of them being born. Son Edward died aged 21, in 2011.

Although it is too late for her and husband Neil, the 48-year-old said other families would not have to go through the devastation she has.

She said: “Losing one child is hard to take for anyone, but when you go through what we have, it destroys people and it destroys families. Something like this would have saved our babies and it would have saved Edward. It’s been three years since Edward passed away, and he would have been 25 this year. The pain is always there for us but this has been a focus for us and it’s absolutely brilliant to get a stage closer.”

A Department of Health spokeswoman said that following some additional work which will take place over the summer, regulations will be drawn up to be set before Parliament.

A final decision to allow the treatments will need the approval of both Houses of Parliament but could come as early as next year.

Mitochondria are tiny powerhouses in cells that generate energy and have a small amount of their own DNA, separate from the bulk of the human genetic code.

Defects in mitochondrial DNA (mtDNA) are responsible for a host of inherited diseases, including conditions leading to muscle wasting, heart problems, loss of vision, organ failure and epilepsy.

MR treatment, which employs two different IVF techniques, aims to prevent these diseases by giving babies healthy mtDNA from donor eggs.

The baby is born with normal “nuclear” DNA passed down by its parents – containing most inherited traits such as eye and hair colour and height – plus a tiny amount of mtDNA donated by a second donor “mother”.

In effect, the baby has three genetic parents, though the donated mtDNA contains less than 1 per cent of its genes.

Since the healthy mtDNA would be inherited by future generations, the treatment has the potential to eradicate mitochondrial diseases from affected families.

Critics argue that allowing the treatments could be the first step down a slippery slope towards “designer babies” and eugenics.

If mitochondrial replacement is permitted, more than 100 “three-parent” babies could be born in the UK each year.

“As the Government’s latest consultation has again shown, there is broad public support for making mitochondrial replacement therapy available to patients,” said Dr Jeremy Farrar, director of the medical charity the Wellcome Trust.

“There is now no excuse for the Government not to table regulations for debate as soon as Parliament returns this autumn, so that the HFEA (Human Fertilisation and Embryology Authority) can licence clinics to treat affected families without delay once it is satisfied that any risks are accepta-
ble.”

 

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