It is worth speaking to your local medical team to see what help is available within your region. Here are a few more groups in my area that could have helped, although due to my short life, we did not get an opportunity to become involved with them.
The Rainbow Trust is a local charity which provides support at home to parents of terminally ill children or children with life threatening illnesses. Like the other support groups their help runs from Diagnosis through to treatment and bereavement. They are not there to provide medical assistance and support to the sick child, but they can sit by their bedside, take siblings out for the day, take you food shopping, take you to hospital appointments, sit in with you and help you understand what is being said, and that you get your questions across and provide general respite care to the parents.
More details can be found on the Rainbow Trust website.
Make a Wish
This is a charity whose purpose is to make a wish come true for children with terminal illnesses between the ages of 3 – 17. They are there to help put a smile on a child’s face by making their dream come true. It also helps build a magical memory for all of the family involved.
To refer a child or make a wish please go the Make a Wish website.
Family & Friends
Don’t forget your family and friends are there to help you too. Lots of very kind people helped Mummy and Daddy, they brought them food as they weren’t eating very well at first, some brought them shopping, and some provided a friendly ear to listen too when things were getting a bit tough. Don’t be afraid to ask your family and friends to help you if you need it. Some may be unsure of how they can help, or may wish to give you space. Don’t be afraid to tell them what support you need from them.