She’s had a tough year… but now four-year-old liver transplant patient Emily gets to spend Christmas at home – Wales Online

Dec 18, 2014

By Emma Sisk

A little girl who had a life-saving liver transplant this year has made it home in time for Christmas.

Four-year-old Emily Down was diagnosed with liver disease when she was just eight-weeks-old.

Mum Jane said Emily had two forms of liver disease and both attacked her liver.

She said she noticed a dramatic change in her daughter last Christmas.

Jane, 41, from Thornhill in Cardiff, said: “She turned yellow from the tips of her toes to her head and even in her mouth. She had really bad jaundice. She was very small and couldn’t put on weight.

“She was doing everything that any other toddler, child or baby would have done. She went to nursery for 11 months. She had a really good four years.

“But I started to see last Christmas that she wasn’t quite herself. She had some tests done and we were told it was nothing to worry about. It was in the beginning of July that she started to feel really poorly.

“Her tummy started to swell up. It got really bad at one point and I remember saying how much bigger can it get without it going pop.”

Emily Down from Thornhill, Cardiff, photographed in hospital with her parents

Emily was admitted to hospital and from there Jane said her health deteriorated rapidly.

She said: “It all happened so quickly. By the end of that week in July she was completely yellow in appearance. She had a massive internal bleed and was taken by ambulance to hospital in Birmingham.”

On September 2 – the day Emily was supposed to be starting school – Jane received the all important phone call that Emily could have her life-saving transplant.

She said: “Even though we had the call nothing is certain. You don’t know until they are taking her down to theatre that the liver is suitable. They took her down the next morning at 11am.

“We watched her go downhill so quickly. We knew time was running out. You could see it in the eyes of the doctors, nurses and the team but they kept her alive. They kept her going and got her through. She kept smiling all the way through. We owe everything to them for getting her to the point they did.”

Emily was due to be discharged on October 13 but developed pneumonia.

Jane said they “nearly lost her that week” .

She said: “It was the most frightening time of my life. We didn’t know if she would pull through it. It was absolutely awful. She was so ill.”

After almost three weeks, Emily started to make improvements and Jane and dad Andy were able to bring her home on November 5.

Jane said: “In our situation you have goals. Little markers you aim for because you don’t know what is going to happen. One of ours was to get to Christmas.”

The family received great support from Children’s Liver Disease Foundation.

Jane said: “They provide families like ours with fantastic support throughout the rollercoaster ride of liver disease. They continue to help us enormously and I know that as Emily grows this support will be essential in providing guidance for both us and Emily as she meets the hurdles and challenges that life post-transplant will throw up along the way.”

For more information about the charity, see www.childiverdisease.org

via She’s had a tough year… but now four-year-old liver transplant patient Emily gets to spend Christmas at home – Wales Online.

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