The family of a four-year-old girl have described the 'emotional rollercoaster' of the last year, as she awaits a new heart in hospital one year on.

One year ago this week, four-year-old Evie Green, from Middlesbrough, was admitted to the children’s heart unit at the Freeman Hospital in Newcastle.

As this poignant milestone approaches, Evie’s mum Chloe, wants to raise vital awareness of the need for more child organ donors.

The Northern Echo: Evie GreenEvie Green (Image: NEWCASTLE HOSPITALS)

Describing the heartbreak of seeing her daughter, who has dilated cardiomyopathy, having a tricky life full of hospital trips and awaiting a heart, Chloe said: “We managed to remain at home for nearly three years which is amazing, however it was inevitable that this would be the situation we would find ourselves in.

“You have optimism that you might have a quick stay but the night before her admission on Valentine’s Day, I put Evie to bed with a strong feeling that it may be the last time for a long time.

“It hurts that we are still here and although Evie is doing well at the moment, there is no guarantee she can remain this way. Children usually have a long wait for a new heart, and I had the time to prepare for that reality when at home with Evie for three years.”

The Northern Echo: Evie in hospitalEvie in hospital (Image: NEWCASTLE HOSPITALS)

Currently, there is a significant lack of child organ donors resulting in children and their families waiting for a life-saving donation that tragically sometimes doesn’t come.

Reflecting on the last year on the children’s heart unit – the place Evie now calls home – Chloe added: “I would describe the past year as an emotional rollercoaster. We have watched Evie become so poorly several times and it is heartbreaking.

"From her initial operation to her machine not working, to sepsis, we have had our fair share of emotional trauma. Evie being well, is our only way of coping.”

Evie is taking part in a national campaign ‘Waiting to live’ which aims to encourage parents and families to consider organ donation and, it is hoped, register themselves and their children as donors.

The Northern Echo: Evie is awaiting a heart a year onEvie is awaiting a heart a year on (Image: NEWCASTLE HOSPITALS)

As part of the campaign children currently waiting for life saving organ transplants were transformed into handmade dolls placed across the country with Evie’s doll hosted at the Freeman Hospital.

Although they try to keep life as normal as possible for Evie and their son Theo – it is anything but – Chloe said: “We are set in a routine whilst things are okay so me or my husband are always with Evie as the other one will be with our little boy at home who is in school.

"Theo will visit when he can at weekends or during the school holidays. It is very difficult, but we have no choice but to make it work. Me and my husband are like passing ships as we don’t get to spend any one-to-one time with each other.”

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Evie cannot leave hospital without the gift of life and her family are huge advocates of organ donation but understand that in order for Evie to get her transplant another family has to go through something unimaginable.

Chloe said: “I think my only advice to those in that gut wrenching situation is to not be hard on yourself for whatever decision you make. It is a question people don’t prepare for - however, using Evie’s journey and other children waiting could help spark conversations about seeing lives that could be saved from an organ donation.

“I think asking yourself about whether you would accept a donated organ for you or your child and if you could donate yours or a child’s organ to leave a legacy for that life.”