Real Life Story

Tragedy to Triumph: The Amy Parr Story

Bringing a child into the world is the happiest day of most parent’s lives, but that happy moment can quickly turn into a nightmare. For Samantha and Darren Parr that nightmare began four years ago after a routine pregnancy started to go wrong. Amy was due to be born in September and early on the morning of the 18th, doctors realised her heart rate was dropping rapidly. It was decided that an emergency caesarean was necessary and Sam was whisked off into surgery. Newborn Amy stopped breathing for eight minutes and her parents were told she might be paralysed from the neck down.

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”.

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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 so 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 through a tube. 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 amazing work. He added, “GAIN is only a small charity. They called us and offered us advice and support packs when we needed it most. They asked us if Amy would be the face of the charity for 2016, and we agreed as it is their centenary year. They have supported us through such a tough time, and I really wanted to do something and give back to them”.

Amy is now looking forward to starting school and continuing to delight her friends and family with her zest for life.

If you would like to support GAIN so that they can continue with their extraordinary work, please visit or text GAIN16 £amount to 70070 to make a donation in the amount £1, £2, £3, £4, £5 or £10. Every penny of your donation will go directly to GAIN. Please note you may be charged for your text message by your network operator, so please refer to their standard rates.Amy Parr - GAIN Logo

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