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.