AFTER the birth of their darling daughter, Adam and Amy thought their dream family was complete.

They had a healthy son, a newborn daughter and a beautiful home in a rural village.

But in April 2017, just a year-and-a-half after Emily’s birth, their dream had turned to dismay. The couple from Collingbourne Ducis were struck with the news that their baby girl had an extremely rare and life-limiting genetic condition. The postnatal neurological disorder, named Rett syndrome, would dramatically change almost every aspect of their lives.

“It was devastating,” said Adam, 27, who works as a mental health nurse. “Amy works as a paediatric nurse and because she had seen it before she had an idea about it. She knew how serious it was.”

The condition, which almost exclusively affects females and just one in every 12,000 girls, has a severe impact on a child’s cognitive ability. For Emily, who has a particularly poor prognosis, it will stop her from talking, eating or even being able to sit up straight for the rest of her life. Consequently, Emily has a tube fitted which sends food directly to her stomach. But that’s far from problem solved for the Collingbourne couple. Amy and Adam say that a feed can take up to an hour at a time and Emily needs four a day.

“It can be really difficult,” said Amy, 28. “Even once she’s fed she has to be kept upright for thirty minutes because there is still a risk she can choke.” She added: “It’s been really hard for us because friends and family won’t look after - not because they don’t want to but because they are worried. “Even something like going food shopping can be really difficult unless there are two of us.”

Although Emily’s cognitive condition will never improve, she is expected to physically grow up much like any normal child. The couple say this will have a profound impact on their lives in the future - and will even force them to move home.

Adam said: “Because of the slope at the front of the house we would never be able to get her in and out safely. We moved from Andover to be out in the countryside and we’ve both worked really hard and saved to be able to buy this house.

“Because of the condition we will have to move back to Andover where we can buy something which will suit Emily’s needs. She’ll need hoists, a specially fitted bathroom and round the clock care.”

As well as having to deal with the impact of Emily’s condition now, the couple have also had to come to terms with the fact that their daughter will likely die before the age of 20. Rett Syndrome sufferers can live to the age of 40 and sometimes beyond, but Amy and Adam say that many die suddenly in their adolescence due to epileptic seizures or heart complications.

They also say that due to her poor prognosis, Emily could die earlier than many other Rett Syndrome suffers.

Adam said: “As a parent you just never expect to be at your own child’s funeral. We are trying to come to terms with it, but we try not to think about it too much.”

Despite the impact and ultimate outcome of the condition, the couple remain positive about their future with Emily. She is learning to use eye-gaze technology, with the couple hoping she will one day be able to communicate through the use of her fully-functional eyes. Although the Smiths are currently using paper cards with symbols to teach their daughter, they aim to one day get Emily using a more advanced electronic system - similar to that used by professor Stephen Hawking.

Amy said: “If you look at her eyes she can tell you things.

“If you ask her a question and she holds her gaze it means yes, whereas if she breaks her gaze she means no.

“I hope one day she will be able to say something like ‘I love you’ using her eyes.”

On top of the use of eye-gaze technology, the couple have enrolled Emily into Ludgershall Pre-School for the coming term. The couple say the staff have been ‘amazing’ in their attempts to accommodate Emily, and have even undertaken specialist training ahead of her arrival.

Amy added: “Emily will love it. Whenever she is with a group of children and watching them playing she’s always smiling, even if she can’t join in herself.”

As well as enrolling Emily into pre-school, Adam and Amy are also attempting to fundraise to help pay for life-changing equipment for their daughter. The couple are hoping to raise £5,000 to help cover the cost of a specially adapted wheelchair, which is currently not funded by the NHS or local authority. Adam said: “Amy is pregnant and due in October. “When we have the baby because we don’t have an adequate wheelchair right now, essentially we won’t be able to take Emily out of the house. “The money will help the cost of that and other equipment like the eye-gaze which will improve Emily’s life.” They couple, who have already raised £2,500, have a Go Fund Me page at gofundme.com/hope-for-emily-rose.