Support Families Who Have a Terminally Ill Child

Our gorgeous little boy, Samuel, has a life-threatening heart condition. He underwent his first open heart surgery at just four days old. His heart condition means he has to be watched all the time. Crying and coughing could trigger a cardiac arrest, so we need to keep him calm.

Our friends and family offer to look after our daughters Daisy and Betsy but no one’s comfortable taking on the responsibility of looking after Samuel. The only person who gives us a break from our desperate situation is Sarah, a Family Support Worker from Rainbow Trust.

We couldn’t do without Sarah’s support. She’s been supporting our family for two years. When she looks after Samuel, it gives us time with Daisy and Betsy. Samuel wakes in the night up to 25 times, so having Sarah there to look after Samuel during the day means we can catch up on some sleep after a difficult night.

She also cares for Betsy while Samuel has his hospital appointments. If we’re delayed, which often happens, she picks Daisy up from school. When Samuel had major surgery last summer, he was in hospital for a month. We didn’t have a car, so Sarah was our lifeline. She drove us to the hospital and would keep Samuel and Betsy occupied for hours while we spoke to doctors.

Samuel was still recovering from his heart surgery last Christmas and it was a struggle. Without Sarah, we don’t think we would have remembered everything we needed to make the day special for the children. She collected the Christmas tree, helped with the shopping and made pigs in blankets - Betsy’s favourite! She sat down with the Argos catalogue and helped the girls write out their Christmas lists too.

Without Sarah, we wouldn’t be able to manage. Please support Rainbow Trust to reach out to more families at Christmas and throughout the year.