A tin of sweets ...and the best Christmas ever

Amy and Mia Parr who both could not move from the head down when they were born due to an extremely rare neurological condition beat the odds by walking for the first time.

She was a child in a billion: one of only four babies in the world with a neurological condition that rendered her motionless from the head down.

She might not live past her first birthday, her parents were told, and if she did, she would be paralysed.

But at age two, and on Christmas Day, she walked.

“In the evening, my dad had a tin of chocolates and Amy wanted one from him,” said her mother, Sam.

“He joked to her and said, ‘if you want one you’ve got to walk to me’, and she did.

“It was so amazing that we were all there and it was honestly the best Christmas present anyone could ever have.”

Earlier, the signs could not have been more grim.

She had been diagnosed at birth with symptoms of chronic inflammatory demyelinating polyneuropathy, a condition that causes damage to the myelin sheath, which wraps around nerves to protect them.

Doctors at London’s Great Ormond Street Hospital began treatment, but Mrs Parr and husband Darren were warned to expect the worst.

“We were told things like she would be paralysed, she would probably never walk, if she got a cold she would die because she was too weak to fight it off,” Mrs Parr said.

“The doctor at our local hospital told us we would be lucky if she reached her first birthday because she was so weak.

“It seemed like every day it was bad news after bad news. I think I cried every day for six weeks.”

But at home in Herne Bay, Kent, she noticed a development. Without warning, Amy’s leg began to twitch.

“She was lying on the floor and I saw this flicker in her leg,” said Mrs Parr, 28.

“I wasn’t sure if it was my eyes playing tricks on me because I’m willing to see it.

“Then it happened again and I just burst into tears.

“It was something I never ever thought that I would see – I prepared myself that she would be in a wheelchair, she wouldn’t be able to move.”

Then Amy started to meet milestones. By six months, she was sitting up. Now she is at school and attends stage classes on Saturdays.

But it was her first, tentative steps towards grandpa Stan on Christmas Day 2013, that marked the turning point. It is a moment the family will remember this Christmas, as they have every year since.

“Amy loves dancing, singing and entertaining,” said her mother.

“We never expected to be watching her in shows. It was something that was so far from what we ever imagined for her and that makes us more grateful and we appreciate every little thing that she can do.”

Mr and Mrs Parr had a second daughter Mia, now aged two, who also suffered from the condition.

“We were told that we were the first family in the world to ever have it for two babies,” her mother said.

“With Mia we were a lot more relaxed, we were a lot calmer because we had already dealt with it with Amy.

“She made a quicker recovery initially and she is bobbing along like a normal toddler.”

Dr Adnan Manzur, the sisters’ paediatric neurologist, said: “I first saw Amy and Mia in early infancy with severe weakness caused by a very rare neuropathy condition. We were delighted to be able to identify a treatable condition With the right medication, they responded to treatment and it’s fantastic to see how well they are doing now.”