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.