On Christmas Day, with her eyes fixed firmly on a brightly-wrapped sweet in her grandad’s hand, little Amy Parr toddled towards him, reaching out for the treat.
“I still break down when I remember that moment,” recalls mum Sam. Not only were they 15 months old Amy’s first steps, a precious milestone for any mum, they were steps she was never expected to take.
It felt nothing short of a miracle for Sam, as doctors predicted her little girl would be paralysed for life and not live beyond her first birthday.
“There were gifts all over the floor and Amy was in her little vest as it was nearly her bedtime” she says. “She kept staring at an orange Heroes sweet in my dad’s hand, then stood up and walked over to get it.
“We cheered, clapped and cried. It was the best Christmas present we ever imagined.”
Amy’s now a happy girl of nine and her amazing progress has seen her and younger sister Mia immortalised in a new animated film for Great Ormond Street Hospital’s Home For Christmas campaign.
Mia is seen dreaming about travelling home from the hospital and waking when Amy brings her downstairs to open her presents. The film ends with real clips of the adorable sisters at home in matching elf pyjamas last Christmas.
The happy scene is a long way from the awful moment the family were told, when Amy was four weeks old, that she had a neurological condition called chronic inflammatory emyelinating polyneuropathy (CIDP).
Symptoms include progressive weakness and impaired sensory function in legs and arms. It is so rare, Amy was the fourth person in the world to be born with it.
Her birth, by emergency Caesarean in September 2011, was traumatic.
Sam says: “Most new mums imagine hearing their baby cry the moment they’re born then giving them a kiss and cuddle. Amy’s birth wasn’t like that. She didn’t cry and didn’t breathe. My husband Darren started to cry because he’d seen her all floppy being carried away by doctors. He mouthed to me, ‘I think she’s dead’.
“Doctors resuscitated her for eight-and-half minutes. Had Amy not taken a breath, they’d have stopped after ten minutes. They rushed her out in an incubator and I didn’t get to see or kiss my baby for another 24 hours. Even then, it was upsetting because there were so many wires and Amy was so fragile.”
Sam, 31, and Darren, 32, from Herne in Kent, spent an anxious four weeks in the special care baby unit at Queen Elizabeth The Queen Mother’s hospital in Margate while Amy underwent countless tests. She could not move anything except her eyes.
Doctors struggled to pinpoint a diagnosis and referred her to Great Ormond Street Hospital. There, they met Dr Adnan Manzur who recognised Amy’s symptoms from one rare case he had encountered 18 years previously.
The couple, who run a family tree surgery business, were gently told Amy was likely to be paralysed from the neck down and unlikely to live beyond 12 months as her body was too weak to even fight off a common cold.
Sam says: “Amy was five weeks old and we were standing around her cot when they told us the worst case scenario, which was horrendous. As soon as we heard we shouldn’t expect her to live until she was one, Darren and I were utterly crushed. I’ll never forget phoning my dad Stan outside in the corridor and struggling to speak.”
Dr Manzur started immunoglobulin treatment straight away. Sam slept by her baby’s bedside, and each night Darren walked the streets close to the hospital to try to find a hotel room. Within a few days he’d spent over £1,000 on hotels.
“We ran out of money and had to borrow some from our parents to get us through,” says Sam. “We were frantic about our poorly child so finding, and affording, accommodation was a worry we could have done without.”
Then, during a weekly physio appointment, Amy’s leg almost imperceptibly flickered. “I didn’t know if my eyes were playing tricks, but the physio saw it too,” says Sam. “It was something I thought I’d never see.
“Emotion took over because I felt it was a sign Amy was trying her hardest to prove everyone wrong.”
Over the next 12 months, Amy’s muscles strengthened. Then came her first steps.
“It felt like a miracle,” says Sam. “My family were all here and we all saw her wobbly walk to get a sweet from dad. We hadn’t dared wish for anything so wonderful at Christmas.”
Amy made incredible progress until she was taking dance lessons and joining in her nursery sports day.
When considering having another baby, Sam and Darren were reassured by doctors that Amy’s condition was extremely rare and not genetic.
The birth of their second daughter Mia, by elective Ceasarean in November 2015, was much smoother. “I was able to hold and kiss Mia right away – it was perfect.”
But when she was three days old, Sam noticed Mia’s legs were very floppy and she did not respond to tickled feet.
Referred again to Great Ormond Street, the same doctors who diagnosed Amy examined Mia. They were astounded she too had CIDP.
Sam says: “We knew she was in great hands. And we were more hopeful of Mia’s recovery because she was only paralysed from the waist down. When they diagnosed Mia with the same condition, doctors said we’re the only people in the world to have two babies born with it.
“They also said they couldn’t believe we were being so calm. But we knew what we were dealing with, knew what to expect and knew we had a good chance of a happy ending.”
Mia was visited by countless doctors who told Sam and Darren their daughter had made medical history. “Their support really got us through,” says Sam.
“Mia’s daily treatment didn’t finish until 1am, but this time we’d heard about Great Ormond Street’s family accommodation, which was funded by the children’s charity. It was within walking distance and meant me and Darren could support each other. It made us closer to each other and stronger for Mia. Without that I don’t think we could have coped so well.”
Mia was in hospital in the lead up to Christmas while Amy stayed with Darren’s mum Julie.
Another miracle happened when Mia was discharged two days before Christmas and just in time for her parents to see Amy appear as the star in her nursery nativity.
“Watching the nativity meant the world to Amy, and to us. And there was more good news in store because Mia responded to treatment straight away.
“So Christmas is extra special for us because it reminds us of Amy’s first steps and Mia being allowed home from hospital.”
Amy, now nine and Mia, five, have come on leaps and bounds and the new GOSH film has delighted the whole family.
Sam says: “Seeing my girls in the film makes us so proud. Without Great Ormond Street’s help, we wouldn’t have our family now. We are so grateful and can never repay them.
Supporting the charity that helps fund family accommodation is the least we could do.
“We go a bit over the top with Christmas because it has so many happy memories for us. It’s a magical time, and having family together makes it even more so. We appreciate every day together because we didn’t think we’d have many days.”