Amy Parr’s family were told the youngster, who suffers from chronic inflammatory demyelinating polyneuropathy (CIDP), would be confined to a wheelchair if she was lucky enough to live past her first birthday.
A six-year-old girl is a walking miracle after the youngster was once paralysed from the head down but defied doctors to take her first steps.
Yet, on Christmas Day 2013, Amy took her first few steps towards her grandfather when she saw him holding chocolate.
Amy’s mother Sam Parr, 28, a retail worker from Herne Bay in Kent, said: ‘It was so amazing that we were all there and it was honestly the best Christmas present anyone could ever have.’
CIDP is so rare Amy and her younger sister Mia, two, are the only known siblings worldwide to suffer from the disease.
Amy and Mia’s family are supporting Great Ormond Street’s Christmas Stocking appeal, which fills the famous hospital, where both girls were treated, with paper stockings containing messages of hope and support for patients and their relatives.
Sisters, who are the only siblings in the world to suffer from a deadly condition that leaves survivors paralysed, love dancing after the eldest (left) took her first steps on Christmas Day
On Christmas Day 2013, Amy Parr, now six, took her first few steps towards her grandfather when she saw him holding chocolate. Doctors told her mother she would be in a wheelchair
Amy’s family were first told the youngster, who suffers from chronic inflammatory demyelinating polyneuropathy, would unlikely live past her first birthday
WHAT IS CHRONIC INFLAMMATORY DEMYELINATING POLYNEUROPATHY?
Chronic inflammatory demyelinating polyneuropathy (CIDP) causes progressive weakness and reduced function in the arms and legs. It is caused by damage to the fatty covering that wraps around and protects nerve fibres.
CIDP can occur at any age but is more common in young adults. Early symptoms often include tingling or numbness in the toes and fingers; weakness of the arms and legs; and fatigue.
Some sufferers spontaneously recover while others experience relapses. Treatment involves drugs to strengthen the immune system. Physiotherapy may improve muscle strength and mobility.
Source: National Institute of Neurological Disorders and Stroke
‘It was the best Christmas present anyone could ever have’
Amy defied the odds a few Christmases ago when she walked towards her grandfather after he tempted her with a sweet treat.
Mrs Parr said: ‘My dad had a tin of chocolates and Amy wanted one from him.
‘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.’
‘I cried every day for weeks’
Mrs Parr was told Amy was ill the moment she was born by an emergency Caesarean section.
She said: ‘She was in the special care baby unit and they’d carried out so many different tests but they couldn’t work out what was wrong with her.
‘From her head down she just couldn’t move at all.’
Amy stayed in her local hospital for four weeks before being transferred to Great Ormond Street Hospital (GOSH) where her consultant shortly discovered she had the rare condition and started treatment immediately.
Mrs Parr said: ‘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.
‘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.’
After defying the odds to reach several milestones, sister Mia was born with the same disorder
Amy’s mother Sam thought she was imagining things when the youngster moved at six weeks
Amy was immobile from the head down at birth and had to spend six weeks in hospital
‘We appreciate every little thing she can do’
After undergoing treatment to strengthen her immune system, Amy went home for the first time at six weeks old.
Mrs Parr said: ‘She was laying on the floor and I saw this flicker in her leg. I wasn’t sure if it was my eyes [were] 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, [that] she wouldn’t be able to move.’
Amy then started to meet other milestones, including sitting up at six months old.
Defying the odds, Amy goes to school and attends stage lessons every Saturday.
Mrs Parr said: ‘She loves dancing, singing and entertaining.
‘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.’
Describing the moment Amy walked for the first time, Mrs Parr (pictured with her husband Darren Parr, 29) said: ‘It was honestly the best Christmas present anyone could ever have.’
Speaking of watching Amy dancing, Mrs Parr said: ‘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’.
‘It’s fantastic to see how well they are doing’
Mrs Parr and her husband Darren, 29, a tree surgeon, were told they are the first family in the world to have two children who both suffer from CIDP.
She said: ‘They were saying “we’re making medical history”.
‘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 Matthew Pitt, consultant clinical neurophysiologist at GOSH, said: ‘Before Amy and Mia presented to the hospital with symptoms of CIDP there had been only four children worldwide that we know of, who had presented like them at birth.
‘Not only is it extremely rare for children to be born showing symptoms of this condition, but before Amy and Mia, it was unheard of for two siblings to be affected from birth.’
Dr Adnan Manzur, Amy and Mia’s consultant paediatric neurologist, added: ‘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, Amy and Mia responded to treatment and it’s fantastic to see how well they are doing now.’
The family are supporting Great Ormond Street’s Christmas Stocking appeal.
Mrs Parr added: ‘It was so heartwarming to read some of the messages on the stockings and it makes you feel a bit more normal.
‘We were so pleased and proud and honoured to be the face of it that we can help other families feel the way that we did by reading them.’