Rainbow Trust

Rainbow Trust Children’s Charity supports families who are caring for a seriously ill child, providing practical and emotional support tailored to each family's individual needs, wherever and whenever support is needed, for as long as needed.

A representivie from the Rainbow Trust said: "We are so grateful to the St Hilda’s Trust for their continued support of our work caring for seriously ill children and their families across Newcastle. Their donations have helped to fund our team of dedicated Family Support Workers like Monica, who are there for families from diagnosis, through treatment and beyond."

Beatrix was only 15 months old when she was admitted to hospital with heart failure in May 2022. She lived as a long-term patient in Freeman Hospital on their specific cardiac unit, being kept alive by a Berlin Heart until she underwent a heart transplant in the summer of 2023.

Bea’s mum, Cheryl, and older sister Eliza caught Covid just before she was admitted. One of their symptoms was them being off their food, so when Bea also stopped eating, they just assumed it was Covid. It was only when she also stopped drinking that they called 111 and from there everything happened really quickly.

Bea’s dad Terry recalls the moment their life took a tragic turn:

“She was rushed to the Freeman Hospital and Bea was in heart failure. They said it was highly unlikely she’ll survive the night unless she had surgery to connect her to a Berlin Heart, which is essentially an artificial heart, and Bea would be on that machine until she received a heart transplant. She was lying in the bed with pipes coming out of her abdomen and running to a huge machine at the end of the bed which was now her heart. It was horrific, but she still had a chance and was willing to fight.”

A hospital social worker at Newcastle’s Freeman Hospital referred Bea’s family to Rainbow Trust and Family Support Worker, Monica, started working with the family in Spring 2022.

“Monica’s support has been invaluable. She has been spot-on with all of us in different ways. I’ll be honest, I had not heard of Rainbow Trust but that referral has given us something so important.”

In the summer of 2023, at just two years old, Bea underwent a heart transplant.

“One day the call came, we took her up to theatre, she knew what was happening, we’d explained to her that she was getting a new heart. I think she was in theatre for about 10 hours. From there it was recovery, learning to walk again, lots and lots of monitoring, but within four weeks of surgery, we walked out of that hospital with Bea to come home. We could not have gone through that time in hospital, and even now out of hospital, without Monica and without the support of Rainbow Trust.

"Ever since Bea was diagnosed, we wanted to give Eliza as normal life as possible, away from the drama and the trauma of living in hospital. We couldn’t have done that without Monica. Monica would take Eliza out for the afternoon and having the experience that she has of dealing with sick children and families in hospital she was the best person to be able to talk to about that.

"We are just one of the families that Rainbow Trust helps look after, they have brought so much to us, to our family and to other children like Bea and to parents like us. We couldn’t have coped without the support of Rainbow Trust.”


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