By Terry | Dad to Bea and Eliza
At only 15 months old my little Bea suffered heart failure and cardiac arrest. She needed a heart transplant.
She had emergency heart surgery to connect her to a Berlin heart. This is a mechanical heart that pumped blood around Bea’s body to keep her alive.
All of this was really distressing to go through. Difficult to comprehend and digest, to make sense of.
We were referred to Rainbow Trust and Family Support Worker Monica started supporting us in July 2022. Monica’s help has been invaluable.
We had trust and confidence in Monica, knowing that Bea would be well cared for and have fun, a little bit of normality.
The ward for organ donation is a place that not many people can understand.
But Monica does.
Every day you live thinking if your child is going to die. The majority don’t know what that feels like.
Monica is like an arm around us, supporting us all along. We don’t have to say anything, we don’t have to explain anything. We could be completely open with her. She doesn’t judge, she has seen our situation time and time again.
Monica took Eliza, Bea’s sister who is now 13, out, spent quality time with her, took her to school and also arranged socials with a child going through something similar.
Since Bea’s heart transplant, now that we’re back at home, Monica continues supporting us.
When all is overwhelming, impossible to manage, feeling that there is no light, a Family Support Worker like Monica can help.
Rainbow Trust Family Support Workers help is tailored to the needs of each family living with childhood illness.
It is only thanks to your donations that we can give life-threatened children and their families this expert support for as long as they need it. Thank you for your wonderful support.
Wishing you a peaceful and wonderful Christmas.
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