Milton Keynes family deal with devastating diagnosis of Dolly, the tiny baby that did not grow

A mum and dad from MK are praying for a miracle cure to save the life of their tiny baby girl.

Kirbi Avery and Jack Harper thought they were dab hands at being parents when their much-wanted sixth child was born in January.

She weighed in at just 4lb 13oz after concerns about her growth during pregnancy.

"She was perfect, said Jack. “She looked like a little dolly, so we called her Dolly-Mae."

But from the start, the couple were worried about Dolly’s weight gain. Fed on Cow and Gate just like all their other babies, she didn’t thrive and put on weight as her siblings had.

"We thought it might be the milk or reflux. We changed the milk, changed the teats, but it made no difference,” said Jack, a self employed roofer in MK.

Kirbi said: “I was having her weighed every two weeks. She didn’t seem to be putting enough weight on... I kept telling my health visitor but she said it was okay, she’s a prem baby and she will catch up, etc.”

But the couple then began noticed some more worrying symptoms.

"Her eyes didn’t seem right,” said Jack. “As the weeks went by she wasn’t focusing on us or following our movements. Her eyes would sometimes roll back,” he said.

Dolly then began vomiting up her feeds and the GP prescribed Gaviscon. But that made it worse.

Eight days ago, as her dad was cuddling her, the baby’s breathing suddenly became laboured and the parents took her to A&E.

"That’s when our whole world changed,” said Kirbi.

“They rushed her to the front of queue and I had all different nurses, doctors and consultants in and out…"

The tiny tot was eventually blue-lighted to Royal Leicester Hospital, which specialises in metabolic disorders. She was put into intensive care and given numerous scans, blood tests and MRIs.

Dolly will remain there for a month while doctors reach a diagnosis, but sadly, early indications are that it is bad news.

“They think she has something called a mitochondrial metabolism disorder. It’s very, very rare,” said Jack.

Mitochondria are structures that produce energy in the body’s cells by combining oxygen with the fuel molecules from food. When the mitochondria are defective, the cells don’t have enough energy and the body fails.

There is no cure and doctors fear Dolly’s case is so severe that it will be life limiting. Her parents, determined to spend every precious moment with her, have not left her bedside while relatives look after their other children.

"We just want to take her home to be with her siblings for however long she has. But we’re praying for a miracle that means she will survive,” said Jack.

"We’ve been told she will be very disabled. That does not bother us at all. She's still our little Dolly and we love her.”

With Jack taking time off work, the family has no income. A fundraising appeal has been launched to help them survive and fund any extra equipment Dolly might need.

You can view the appeal here.

"Whatever is the outcome for Dolly is, we will need all the support we can,” said Kirbi. “Please can everyone pray for our baby girl.”