WHEN doctors said Lexi-Mae Brown, who has Edward’s Syndrome, would not live much beyond Christmas 2014, her family was devastated.
That December was a bleak time, as the her parents Lyndsey and Paul could not celebrate the festive period knowing she would not lead a full life.
It was shocking in 2014 as we didn’t know what to do. It was her first Christmas and we thought it would be her last, so we were all in tears thenLyndsey Brown
But the Spring View 13-month-old has defied all expectations and just enjoyed her SECOND Christmas.
Lyndsey told The Evening Post: “It was shocking in 2014 as we didn’t know what to do. It was her first Christmas and we thought it would be her last, so we were all in tears then.
“I remember New Year’s Eve was the same as we didn’t want the new year to come as this could have been the year she died.
“But she is a living miracle and last month we had a great celebration as if it was her first Christmas.
“We had my mum and dad around and all Lexi’s sisters, Lauren, 20, Dayna, 18, and Maisie, three. She had lots of presents. We saw her first proper Christmas.”
Edwards’ Syndrome, also known as trisomy 18, is a serious genetic condition caused by an additional copy of chromosome 18 in some or all of the cells in the body.
This disrupts the baby’s normal development and, in many cases, causes them to be miscarried or stillborn.
Around one in every 12 babies born with Edwards’ Syndrome survives beyond one year, and they will live with severe physical and mental disabilities. Some children do survive to early adulthood, but this is very rare.
At 13 months, Lexi-Mae is progressing well and surpassing doctors’ expectations.
Lyndsey, 37, said: “She is doing really well now. She gets colds worse than normal and takes longer to recover but at the moment she is doing well.
“She is growing and putting weight on. She is practically rolling over now and grabbing for things. She is happy and always laughing. No-one thought she would ever do those things.
“Doctors and professionals are amazed when they see her. They can’t give an estimate over how long she will live but she is in good health, apart from her kidney problems which causes urine infections.
“I don’t think doctors know much as they have never really treated a child with Edward’s as they don’t reach that old, so at the moment, Lexi-Mae is teaching them.”
Lyndsey is now trying to raise awareness to ensure babies with Edward’s Syndrome are given the best start in life.
She said: “I want to make sure babies are not judged by the fact they have Edward’s Syndrome. No two babies are the same.
“Nobody expected Lexi-Mae to get as far as she did.
“I am part of a support network and I have been helping a woman who was fighting doctors at Birmingham Hospital who said they would not resuscitate her baby. She took a portfolio of information and managed to change their minds.
“Doctors don’t think Edward’s babies are surviving but they are doing. They do have a life and should be given the right to live.”