Amber Harrison has had to fight for life since the second she was born after fighting a state that means she has half a heart.
But despite her huge battle, and she left so bloody she had to use a pushchair until she was nine, Amber is her mother's inspiration.
In January 2004, born from Southend University Hospital, Essex, in January 2004, weighed 8lb 11oz, Amber was cyanotic – or blue – due to lack of oxygen.
It was immediately taken for tests and was diagnosed with whole ventricular septum atresia.
This is a congenital heart condition where the main pumping chamber is not right with the heart developed properly and a large valve has been blocked.
Her mother, Zoe Harrison, was amazed.
The 44-year-old had a hada textbook pregnancy.
She and her husband, Lance, 48, who had a son, Vaughn, 11, had no warning signs of the hopeless times ahead.
But now Amber, 15, still fighting serious health issues, achieves great grades and is determined to go to university.
Zoe, who works in a train company, said: "She's my inspiration.
“If I had this diagnosis, I wanted to be in bed through time, but Amber is determined to live life to the full.
“Her dream is to go to university to study international business.
"All you need is to be good enough to go to school and study, but that's not always the case."
"Even having been threatened with a fine in school if her attendance does not improve, we find her scary.
"She is only able to do a few days a week at the moment, but she is still a high performer.
“But the biggest frustration for her, however, is that people don't take her seriously, and think she doesn't know what she's talking about in managing her condition because she is a child – when she's really, we know better than anyone. ” t
Zoe had been working with Amber for hours when she started haemorrhage and was moving in and out of consciousness.
She said: “My memory is still quite crazy but I remember being convinced that she wasn't going to make her and panic that she didn't have a name.
“I told Lance, allwn I couldn't let her go without one. 'It was so frightening that I don't think I've processed it properly.'
Later that day, Zoë was washed down to see Amber in neonatal intensive care, where she loved all kinds of machinery.
From there, the newborn baby was transferred to a more specialist Royal Brompton Hospital in west London, and her mother was forced to stay behind in Southend while she had recovered.
He said: “I could hear all these other parents with their babies on the ward that night.
"By the morning, I was absolutely desperate to come along to Royal Brompton to see Amber.
“Lance and I arrived that afternoon and that was when we had the official diagnosis.
“Amber is essentially half-hearted. But each case is different, so it was difficult for doctors to predict the result.
“I had all these leaflets to read to find out more, but I wasn't ready.” T
According to the British Heart Foundation, pulmonary atresia with complete ventricular septum is a developing abnormality in the womb.
On a day only, Amber had a shynt fitted to enable more blood to flow between her heart and lungs – staying at the Royal Brompton for the next three weeks, where she was; It seems to be thriving.
In 11 weeks, he returned for his next operation – balloon valvuloplasty – where a hollow tube called a catheter is then inserted to heat it to burn a small hole in the valve that has been blocked.
Next, using X-ray pictures for instruction, a small balloon is placed through the hole and enlarged to stretch the valve open, before being deflated and moved.
Zoe said: “Despite everything, she seemed to be doing very well and had a greater awareness of the world.
Amber, who sometimes has to wear a full ski suit to stay warm, was her third – and, so far, the last round of the operation at seven years old, to get rid of her shunt.
Zoe said: “She was a great speaker and even taught her some sign language.” T
But growing up Amber's condition meant that his energy levels could deteriorate quickly and she also found her hard to cope with the cold.
Zoë continued: “She's very sociable, but when her friends came around, our tires would be fast.
"We eventually had a TV in her room so that she could sit and watch when she needed a break, while her friends carried on jumping around.
“She also needed a pushchair until she was about nine years old. We will have all sorts of looks and comments.
"I don't blame people, because they didn't understand, but so many people told us,‘ Why not go out and walk?
“She had to take a year out of school too, and she was very disappointed.
“Where she's sensitive to the cold too, she was in a full ski coat every year before the rest of us started wearing jackets.” T
For a long time, Amber was “denying” her condition, according to Zoë, who said that her daughter wanted to be treated like everyone else.
But that all changed in August 2018, when he attended a weekend trip with the charity Little Hearts Matter, who has been supporting the family since Amber arrived five.
Zoë said: “That was a real turning point. She was really committed to some of the other children, and the great thing was that they were providing support to Vaughan as well.
“He has never known anything different, but as a family, we are criticized for having to do things a little differently.
“The change in Amber's confidence has been incredible. Now she has the power to say,, No, I am tired and accept when she needs to replenish her energy levels. ”
Now, although there is no cure for Amber's condition, she is currently waiting to hear if she needs more surgery, after a period of difficulty with fatigue.
Speaking, Zoë would like to thank Little Hearts Matter, who has recently awarded Amber the A Heart Award and Brave Heart, for her growing confidence in managing her heart condition at school, and raising awareness of invisible diseases.
She shares her story as a new survey by Little Hearts Matter has revealed that young people are living with half a heart; have been rescued by scientific advances, just to feel that they have been disappointed by society.
About 47 percent say they feel isolated and are left out of activities, preventing them from achieving the same as their peers, and 70 percent living with anxiety as a result t to their condition.
He said: “To look at Amber, you never knew anything was wrong. But that can sometimes work against us, because people don't take it seriously.
“They'll think it's just teenage fatigue, or encourage them to push themselves a little harder when she's really, she knows herself, and When she says she is tired she's editing.
"Literally, she will have to rest for hours, not talk, not move – nothing.
“I want people to know more about her condition so that they would have more respect for what she and her mother do.
“Still, I'm so proud of her.”