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Mum asks nation to talk about organ donation as son waits for heart

News   •   Aug 25, 2015 14:19 BST

Kate Perkins, from Lower Quinton, is on a mission to encourage people to talk about organ donation as her son waits indefinitely for a new heart which is his only chance to fight his heart condition.

Before  Archie was born, it was discovered that there may be a possibility the blood flow around his body was being restricted due to a narrowing of the aorta. The day after he was born, Archie was taken for treatment at Birmingham’s Children’s Hospital (BCH) where it became clear his condition was incredibly serious - at six days old he had surgery. In March 2015, the pressure on his heart was affecting his lungs, this was unsustainable and his only option was a transplant, so BCH referred us to the Freeman for an assessment Archie required specialist treatment and care.

In June 2015, after a family holiday, Archie was transferred over five hours away from home in Lower Quinton to the Children’s Heart Unit at Freeman Hospital, Newcastle.  They have been waiting in Newcastle for a lifesaving organ to become available ever since.

During their time in Newcastle, the couple have been given emotional and practical support from The Sick Children’s Trust – a charity that keeps families together at the worst of times by providing free-of-charge ‘Home from Home’ accommodation at its on-site Scott House.

Kate has been inspired by Archie’s battle to raise awareness of the need for organ donation and has created a moving video chronicling Archie’s story. Despite her difficult situation she has also pledged to give something back to the charity which has supported her family and will be running the Great North Run in September to raise money for The Sick Children’s Trust.

She says: “Without the accommodation that The Sick Children’s Trust provided us, I don’t know how we would cope. When we arrived at Freeman, we weren’t told a date that we would be leaving and we still don’t know. It all depends on when a heart becomes available for Archie, so having Scott House where we can set up a second home is brilliant.

“Currently, Archie is generally in good health, but we know he will deteriorate the longer he has to wait. There are some really sick children in the hospital and I decided that instead of waiting and wallowing I would do something, take action.

“I felt that alongside completing the Great North Run, which is giving me something to focus on and will raise awareness for The Sick Children’s Trust, the video will raise awareness of the importance of organ donation which is a lifeline to so many. I’m just a Mum who is trying to do her bit and raise awareness while I don’t know what will come tomorrow, while my life is on hold for now.”

Kate has already trebled her fundraising target of £300, reaching £950 on her Just Giving page. Ongoing running costs for the Scott House are estimated to be between £70,000 - £100,000 and The Sick Children’s Trust relies entirely on voluntary income to cover these.

House Manager, Andrew Leadbitter, says: “When Kate showed us the video, we were all really moved by it. It tackles something which at the moment is a very important issue by telling the story through Archie – a little boy who is actually in need of a heart – it was very emotional.

“We have got to know Kate and Nick very well over the last couple of months and admire their attitude and their drive to take action. We’d like to thank Kate so much for doing the Great North Run for us – and we will be there to cheer her along to the finish line.”

To to support Kate, please visit her Just Giving page.

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