Support Families Who Have a Terminally Ill Child

Nicole and Jessica were diagnosed with Batten Disease within three months of one another. The sisters receive enzyme replacement therapy every fortnight but Jessica is too young to have it in England so the family must travel to a hospital in Hamburg, Germany, while Nicole, now five, goes to Great Ormond Street Hospital in London.  

The unimaginable strain of juggling these appointments with normal life, has been made easier for their family because of Rainbow Trust, which has provided some calm and routine to their intense schedule.

Rainbow Trust Family Support Workers Sabrina and Kate provide practical and emotional support to the whole family by taking the children out and giving parents Gail and Matthew some much needed respite. 

“We would be absolutely stuck without Rainbow Trust,” Gail says. “It’s having that regular support which we can plan things around. We want to enjoy every precious moment of all being together.”

Gail and Matthew’s determination and motivation, together with Rainbow Trust’s support, has helped them remain strong.

“Rainbow Trust knows how much we need and appreciate them. They are our only source of structured support and they enable us to do things together and they’ve got our back.”   

Rainbow Trust is a national charity which offers practical and emotional support for the whole family; from their child’s diagnosis, during treatment and, if needed, through bereavement. Your donations are currently helping over 2,300 families each year.

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.