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Evie’s Story – Organ Donation Week 2023

Monday 18th September to Sunday 24th September 2023 marks Organ Donation Week.

This campaign takes place every year, aiming to raise awareness about organ donors and the ongoing need for them.

The campaign has a target of reaching 25,000 people this year and to register their decision to become an organ donor after they die, saving more lives.

There are many ways you can get involved and to raise awareness during Organ Donation Week, find out more here.

Evie’s Story

4-year-old Evie, has spent 7 months in the Freeman Hospital and is listed, urgently waiting for a heart transplant. Therefore, she will remain in hospital until a suitable donor is found.

She was diagnosed with dilated cardiomyopathy at the age of 4 months old. With no medication, she managed to remain at home for just over 3 years before she deteriorated in February 2023.

Evie has had the Berlin heart implant. This keeps her heart going and acts as a bridge whilst waiting for her heart transplant. However, this means that there is a 30% chance of having a stroke whilst on this machine. It’s an invasive machine that has took a mental toll on Evie.

Did you know that due to a small number of child donors, children have 3 times the wait as an adult for a donor transplant and unfortunately means that children do die whilst waiting.

Rainbow Trust is a children’s charity supporting families with children who have life-threatening or terminal illnesses by providing emotional and practical support.

Evie’s family said:

“Rainbow Trust have been brilliant supporting Evie in hospital with fun games and activities which is a main priority for us to make sure Evie’s stay is as fun as possible. They have been very flexible and a true help during this difficult period.”

How can you help?

Evie’s family are raising awareness of organ donation, including child organ donation, as conversations about this don’t happen often enough.

“We just want families to use our journey to discuss about what they would do. Would they accept a donated organ for their child? If so, could they give that same gift of life to several others? Please have that conversation today.”

Learn more about Organ Donation Week

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