Every life-threatened child and their family should receive support. Stand with families in need.

"I felt really isolated and alone. It was as if I was fighting a long and lonely battle, despite having people all around me in the hospital."

This is how Ella-Mae felt when they learned that their premature twin daughters had a chronic lung disease and that they might not survive.

One of the most stressful and traumatic experiences for a parent is when their child has a life-threatening or terminal illness. Parents can be under severe strain for many months or years.

Ella-Mae found help at Rainbow Trust when a Family Support Worker helped her adapt to moving the girls back home, taking them to outpatient appointments, assisting them with their oxygen and providing Ella-Mae and her partner with a break from caring.

Our Family Support Workers were on the frontline and continue helping families practically and emotionally so they don't have to manage alone while they go through some of the toughest times they will ever face. However, there is no dedicated government funding for this kind of family-centred respite care - support which can often be the difference between a parent coping, or not.

This needs to change, and change now.

"I couldn't have done it without my Family Support Worker and Rainbow Trust. Having her help for a couple of hours was like coming out of deep water and being able to breathe again. Having someone to talk to and who helped caring for the girls was amazing."

For many of us, this year has been the first time we experience the worries and isolation of the unknown. But for the families we support COVID-19 is a heavy burden as they live alongside yet another serious risk to their child's health.

During this Coronavirus crisis, families whose life has already been turned upside down need the tailored and unique support that Rainbow Trust provides more than ever.

Please sign our pledge to stand with the thousands of families with a life-threatened child who need timely access to practical and emotional support when they need it most. Thank you.