The Jessie May Trust is a charity which is specific to the Bristol, North Somerset and South Gloucestershire region, but it is worth speaking to your local GP or community nurse to see if there is a similar charity operating in your area.
The Trust was established to provide care in the home for families of children who are not expected to reach an adult age. It was set up by the parents of a little girl called Jessie May who passed away when she was 4 ½ months old. The team consist of Children’s nurses and Nursery nurses and they come to your home at pre-agreed times, and provide you with a few hours respite so that you can either have a break, go to the shops, clean the house or whatever you may need to do in those few hours, which you normally struggle to achieve.
They care for your child during that time, feed them, play with them, look after them, and you know they are in expert hands.
They also provide a bereavement service as well, and support groups for bereaved parents.
I only got to meet a few Jessie May Nurses, but the ones I met took lovely care of me. I think they would have been an invaluable help to my parents had I survived longer. They used to call my Mummy regularly to see how she was doing, and if she needed any advice or support. They still call her now too, to check she is OK, and my parents have both been to the Purple Parents bereavment support group which they host.
Please click on the following link if you would like to find out more about the Jessie May Trust.