Maggie’s story…

My four-year-old daughter was diagnosed with Tetralogy of Fallot when she was ten days old and required open heart surgery when she was six months old to correct some defects in her heart. She was a poorly baby and was tube fed for eight months of her life. She has since been diagnosed with autism. 

I recently attended a pottery event organised by Heart Heroes. It was great to be able to meet other families of children with heart conditions and share stories and feelings with people who have been through the same as you. To be able to share frustrations and fears, as well as have fun and make new friends is very much needed. Heart Heroes creates wonderful opportunities for many families for which we are very grateful.

It can feel very lonely and isolating having a child who is poorly or who has developmental issues, so to meet families who ‘just get it’ is very comforting and helps you remember you are not on your own.

Without Heart Heroes…

‘Without Heart Heroes, my daughter would feel so isolated and Alone. That she isn’t the only child that needs extra looking after and extra special. Without HH, we wouldn’t have other parents to talk to, to ask advice or have the empathetic ear we need to understand what we are going through. The days out, where the girls don’t feel different, special but normal and included. HH is like being part of a big extended family’ Heart Parent’

Support means everything…

‘As a parent I would love it if people would support heart Heroes because its brings joy to the children who are struggling with a lifetime condition. As a mother to a cardiac child having gone through all the ups and downs and seeing the stages that we’ve seen with our child… To have a charity that supports each child to bring back that joy and happiness in just the littlest of ways makes us as parents happy. Having different events organised for the children makes them smile and gives them a time of happiness and to forget their illness’


‘It can be very lonely as a heart parent, especially if your child is complex so having events thats are fun for the children also the parents gives us that little break from the busy hospital lives we normally live. Its great way to meet people that understand the struggles we face every day and just get you as a person who cares for your child (not a lot of people understand our lives) and its nice to talk openly with similar people.

And obviously it is lovely to have someone like Kelly always there wanting to help us in any way she can and push a smile on our faces whenever possible. We all appreciate having someone like Kelly running Heart Heroes’