Carine father welcomes IVF technique to prevent mitochondrial disease

Don, Pippa and Rely Beard.
Don, Pippa and Rely Beard.

A CARINE father whose two daughters have mitochondrial disease has welcomed an “important” move towards potentially eradicating the deadly disorder.

A Senate committee has recommended the Federal Government investigate legalising an IVF technique that replaces a mother’s faulty DNA, representing about 0.1 per cent, with healthy donor mitochondria to avoid passing on the disease to children.

Don Beard’s daughter Pippa (40) has been struggling with the disease for 20 years and suffers a range of symptoms including severe hearing and vision loss, cognitive decline and reduced mobility.

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She sleeps about `15 hours a day and has been on life support four times.

Mitochondrial disease is a genetic disorder passed on by mothers that can cause multiple organ failure and potentially death; Pippa’s sister Toby and mother Rely also have the disease but do not experience the same problems as it manifests in different ways.

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Mr Beard said it was too late to help his family but believed mitochondrial donation was extremely important.

“The bottom line is that it will not only allow a couple to have a healthy baby, but more importantly it will cease that whole maternal inheritance line and eradicate the mito disease from future generations of that family,” he said.

“We have been so blessed that our daughter Toby’s wife, Amy, has had two beautiful babies who share the same donor.

“In an ideal world, Toby would have had a baby herself, but was not willing to run the gauntlet of risking inherited mito disease.”

He said the donated DNA would not affect attributes such as the child’s personality, eye or hair colour and intellect.

“The sceptics should always remember that only 37 of 22,000 genes are actually replaced to allow the mito donation,” he said.

Australian Mitochondrial Disease Foundation chairman Doug Lingard called on the Government to act on the committee’s recommendations as soon as possible.

“At least 60 Australian babies each year could be prevented from suffering severely disabling and potentially fatal forms of mitochondrial disease if mitochondrial donation was available here,” he said.

“It offers the first practical hope for future generations to live free of maternally inherited mitochondrial disease.”

The UK introduced legislation allowing mitochondrial donation in 2015 and Dr Lingard said that provided a sound basis for Australia to follow.