Bea's Story

Full width content image

Toddler Bea celebrated her third birthday in January 2024 after spending her first Christmas at home with a brand new heart.

Bea was rushed to A&E with heart failure when she was 15 months old. She would remain there for 14 months attached to a mechanical heart (Berlin Heart), which kept her alive while she waited for a suitable heart donor.

After that first night in A&E, Bea’s mum, Cheryl, did not return home for 16 weeks. She stayed in hospital accommodation to be close to Bea, while Terry, Bea’s dad, would go home at 7pm and return at 7am.

Coping with the very real fear that Bea might die, separated from their older daughter Eliza all on top of a family tragedy in 2018 when their baby daughter Isabel died of an unrelated heart condition when Eliza was eight took its toll.

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

Monica collected Eliza from school, took her to hospital, had fun with her providing much-needed respite. She would put Bea to bed in hospital once a week so Cheryl could spend more time with Eliza and attend important school events.

“I never wanted to leave Bea,” Terry said. “To have the trust and faith in Monica that I could leave and return to hospital knowing that she would be cared for knowing she was going to have fun was enormous. Without Monica, Bea would be screaming when we left hospital. With Monica she would wave us off.”

Monica provides both practical and emotional support for the family:

“Monica’s support has been invaluable. She has been spot on with all of us in different ways. She was able to come into hospital and the bond she has built with Bea was incredible. She is like family. Unless you have been in that environment you cannot explain to someone what it’s like. You’re living everyday with the reality that your child might die. Monica understands this.”

After a 14-month wait, the call finally came. Bea had a donor and had a heart transplant in July 2023. After recovering in hospital, Bea was able to come home and continue to enjoy life as a happy three year old with her family.

Monica continues to support the family as they settle into new routines and adjust to life at home. The continuity of Monica’s support means this transition has been smoother for Bea, who only knew life in hospital for almost half of her life.

Cheryl and Terry say:

“We wouldn’t have coped without Rainbow Trust. “When all is overwhelming, impossible to manage, feeling that there is no light, a Family Support Worker like Monica can help.”

Please donate today to help us support more families like Bea’s.

Donation image
Donation payment types
Donation payment values.

£5 could provide bereavement support to help a family cope with the death of a child.

Continued support for as long as a family needs us

Continued support for as long as a family needs us

Hearing your child has a life-threatening illness is the hardest thing any parent can experience - but they don’t have to go through it alone.

We provide bespoke continued support to families, helping to negotiate life after a diagnosis. We offer practical and emotional support to the whole family, through their darkest times.

Donate today