Heartbroken parents raise money for Billy

One of the last photos that Natasha Bayliss took of her and her son Billy.
One of the last photos that Natasha Bayliss took of her and her son Billy.

Bonny baby Billy Thomas Atkinson was not quite five months old when this photograph was taken, with his mum.

A few days later he had died - a victim of the rare and so far incurable mitochondrial disease.

Now his heartbroken mum Natasha Bayliss, a hairdresser in Lutterworth, is raising money for a charity - The Lily Foundation - that researches into the disease.

Natasha (28) told the Mail: “My partner and I were devastated by this. It’s so cruel to see your child suffering and then to lose him.

“What we want to do now is to raise awareness of mitochondrial disease, and raise money for charity.

“I’ve got to do it for Billy. He was beautiful. It’s my way of continuing to look after him.And I don’t want other parents to suffer like we suffered.”

Billy was born on January 29 this year, weighing 6lbs 6ozs and “everything was perfectly fine for three weeks” said Natasha, who works at Jazz Hair Design on High Street, Lutterworth.

But a series of problems, including Billy going into anaphylactic shock, convinced Natasha that something wasn’t right. It took time, she says, to convince the doctors that she was correct.

“But he got to 14 to 15 weeks and started having seizures. He was also choking on his milk; he couldn’t swallow.

“I think his sight was deteriorating, and he never got any neck control,” added Natasha.

Billy was finally diagnosed with Leigh’s disease, a variant of mitochondrial disease, just a few days before he died.

Mitochondrial disease effects the little “batteries” in almost every cell in our bodies, which convert the food we eat into energy.

Without effective mitochondria, cells are unable to generate enough energy to sustain normal organ function and sometimes life.

Natasha and her partner James Atkinson, who runs Nuneaton Industrial Cleaners, had Billy christened at the chapel at Birmingham Children’s Hospital on June 23.

“All my family and friends were there” said Natasha. “And it was nice to have help from someone upstairs.”

Billy died on June 28, just a day before he would have been five months old.

“Birmingham Children’s Hospital was great” said Natasha. “But for weeks before that I was screaming out for help, and no one was listening.”

It is this lack of awareness of the disease, as well as the desire to help fund research, that led Natasha and James to the Lily Foundation. The charity fights mitochondrial disease.

The couple have already raised £6,000 for Birmingham Children’s Hospital and £10,000 for the Lily Foundation. Readers can donate through Natasha’s Just Giving page: www.justgiving.com/Natasha-Bayliss1

Natasha said she wanted to thank local people for all their help and support.

She doesn’t yet know if she will have another child, adding: “It’s too soon.”

Because both she and James are carriers, their future children also have a one in four chance of developing mitochondrial disease.