Supporting Terminally Ill Children

I hope you are safe and well.

Our daughter, Amelia, is three years old and has Angelman's Syndrome and chronic lung disease. When she became seriously unwell it was such a scary time for us all.

With everything going on with Covid-19 I was the only one allowed to be with her in hospital, leaving my husband at home with our two younger children.

We were not allowed any visitors and because our household is isolating, getting supplies was near on impossible. 

Our Rainbow Trust Family Support Worker, Amanda, has been literally a lifesaver. She kindly picked up some clothes, toiletries and supplies from home (following all social distancing rules), and also has done some shopping for us and dropped them to me both whilst we were in hospital and then again when our daughter was transferred to the Intensive Care Unit.

The journey as a whole has been incredibly scary and hard, but Rainbow Trust Family Support Worker Amanda took some of the strain and worries away by helping with such simple tasks (that normally we would have taken for granted) and by her invaluable emotional support.

Some of the families Rainbow Trust support have needed their Family Support Workers to source medical and food supplies and drop them to their doors. Family Support Workers have also been providing transport to dialysis sessions, taking breast milk from new mothers unable to see their premature babies in the neonatal units because they had coronavirus symptoms, helping arrange children’s funerals and providing bereavement support to the devastated parents and siblings. They have been on the frontline of the coronavirus pandemic.

We will be in hospital for a while longer and our family will continue to be separated. We can’t see or visit each other and Family Support Worker Amanda helps me coping with this pain.

We can't thank her enough and I would urge you to support this wonderful charity.

Sarah xx

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• The crisis continues