It is every new parent’s worst nightmare to be told by doctors that their child may not live to see their first birthday.

But three years ago that was the grim reality for Samantha and Darren Parr after an apparently normal pregnancy started to go wrong.

As their daughter Amy was about to be born in 2011, doctors realised her heart rate was dropping rapidly. It forced them to operate on Samantha for an emergency caesarean section.

Samantha, of Braggs Lane, Herne Common, said: “Everything was running smoothly until it came to pushing. After the emergency procedure she came out and was not breathing.

“I remember Darren looking at me with tears, they were not good tears. He whispered to me that he thought she was dead.

“She didn’t breathe for eight minutes, and they had to resuscitate her. If it had been 10 minutes they would have pronounced her dead and stopped trying to revive her.”

Amy was kept in an isolation unit for 24 hours while tests were done, leaving both Samantha and Darren in a state of shock.

She said: “It was such a shock. I was scared. I suppose it didn’t sink in as I hadn’t been able to hold her, so it was not like we had had our baby.”

Darren said: “It was overwhelming. The doctors didn’t have a clue what was wrong. Amy was just floppy and couldn’t move anything but her eyes. We were both still getting over the caesarean.

“Then doctors came in and told us it was highly unlikely that she would live to see her first birthday, and that they thought she would be completely paralysed.”

The couple spent six weeks going in and out of hospital for tests before they eventually got a diagnosis for Amy.

She was only the second person in the UK to be born with chronic inflammatory demyelinating polyneuropathy (CIDP), a condition which causes weakness in the arms and legs.

The family was given support by a small charity called Gullain-Barre & Associated Inflammatory Neuropathies (GAIN) and at Great Ormond Street Hospital.

For a long time Amy couldn’t even be bottle fed. But she gradually made a recovery.

Then, after six months, Samantha was first able to feed Amy on Mother’s Day. She said: “It was not easy to see your child being fed with a tube in her face. So when it was finally taken away it was the best first Mother’s Day ever.”

More progress followed, as Amy first moved her leg during a physiotherapy session.

Samantha added: “I couldn’t believe it at first. I didn’t know if my eyes were playing tricks. But when she started to move I just burst into tears.”

Amy continued to make progress, and then at Christmas in 2012 the whole family was gathered to see their own miracle.

Darren’s father had some chocolate, and Amy wanted a piece. So she was encouraged to go to her granddad to get the chocolate, and she took her first steps.

The family captured the moment on video, as Amy defied what doctors predicted and walked confidently.

Samantha said: “It was just amazing, she was called over and she just got up and did it. It made our Christmas.”

Amy is now a lively and bouncy three-year-old who is at nursery school. Her teachers are aware of her condition, and the possibility of a relapse is always on her parents’ minds.

Darren said: “Sometimes she says her legs are hurting, which could be a sign of relapse. But she seems to get on with it and the next day she is usually full of fun again.”

The family received support from GAIN and from Great Ormond Street, so Darren is looking to raise funds and awareness of their work.

He added: “GAIN is only a small charity. They called us and offered us advice and support packs when we needed it.

“They asked us if Amy would be the face of the charity for 2016, and we agreed as it is their centenary year.

"I remember Darren looking at me with tears, they were not good tears. He whispered to me that he thought she was dead" - Samantha Parr

“They have supported us through such a tough time that I thought I ought to do something and give something back.

“I registered to do the London to Paris bike ride last September after hearing about it from a friend.

“At first I thought they were crazy, but they told me that I wouldn’t understand until I got on a bike and tried it.

“I went out and got a bike, and things have gone from there. Now I’ll be riding for charity this September.”

Darren will complete the 234-mile cycle ride from September 4 to September 7, riding approximately 80 miles each day.

To sponsor him visit his just giving page www.justgiving.com/Darren-Parr-GAIN.