Parents fight for baby Scott Holder, who has mitochondrial cytopathy (From Warrington Guardian)

Parents fight for baby Scott Holder, who has mitochondrial cytopathy

8:56am Thursday 9th July 2009

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IT has been 11 days since Mark Holder and Sarah Bain were told that their 10-month-old son Scott would probably end his short life in hospital.

In that time their happy, smiling, bouncing baby boy has been constantly fitting in intensive care.

He has been diagnosed with a DNA disorder – mitochondrial cytopathy – an incurable condition affecting around 4,000 people a year in the UK.

But few of them suffer with the condition as severely as little Scott.

“We always thought he would have a few niggles but that he would be fine,” said Mark, aged 28.

“We thought that as long as he’s here we’re happy. But that hope went with the news of his condition. It’s a cruel, cruel thing.”

Now the family is hoping to start a charity to help others in the same situation, after struggling to find a central help point for Scott.

“We don’t want him to disappear and be just another statistic. We want something there in his name, in remembrance,” said Mark.

Scott’s life has been a never ending spiral of hospital stays, operations and tests as doctors clamoured to find out what was causing his illness.

At two months old he developed diarrhoea, quickly followed by an aversion to food. On New Year’s Eve he was rushed to hospital due to his dramatic weight loss, where he stayed for a month.

Doctors fed him through a tube first through his nose, and then directly into his stomach, but Scott began vomiting four or five times a day. All are telltale symptoms of mitochondrial cytopathy, but were put down to other common problems with young babies.

Another operation ensued, this one to stop him being able to vomit and he was eventually allowed home, to Doeford Close in Culcheth, at the end of June.

Mark and Sarah could finally enjoy their precious baby at home for one week, but their hopes were again dashed when Scott had a seizure and was taken back to hospital.

A muscle biopsy confirmed what specialists suspected – he had the condition.

Few babies diagnosed with it live past their toddling years.

The condition affects the mitochondria, cells which convert food into energy to power the body. If the mitochondria is not working properly then the organs do not get enough energy and shut down.

“He was just a normal baby. He would lie on the floor trying to kick his legs, giggle and smile at you,” said Sarah, aged 23, also a mum to Callum, five, and Sophie, two.

Scott is now living day to day, with his family and doctors unable to tell how long he will live for. He is heavily sedated in intensive care at Alder Hey Children’s Hospital, Liverpool, where Sarah keeps a constant vigil.

One of the hardest parts for Mark and Sarah has been their inability to do anything to help. All they can do is watch as Scott slowly fades away, his body shutting down, bit by bit.

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