These films follow the journey of three families living with, and caring for, a child who has a life-limiting condition. They talk about some of the hurdles they have faced, what support they receive, and how they have dealt with difficult and emotional situations throughout their child’s life.
The films were developed in order to try and reach out to more families, whose lives may be too hectic to have time to read a booklet, or whose situation may be too stressful or distressing to face picking up and reading written information about their child’s care.
Together for Short Lives hopes that by watching families talk about their experiences, other families in similar situations will relate to this, and won’t feel so alone.
Lauren was diagnosed with Non-Hodgkin Lymphoma when she finished primary school. After several rounds of treatment, Lauren and her parents were told that nothing more could be done to try and cure her. With the help of her parents Lauren decided that she wanted to plan her own funeral and to stay at home during the end of her life. In this video her parents talk about the invaluable help they received from a key worker at their local hospital and the support they received after Lauren’s death.
William was diagnosed in the womb with Edward’s Syndrome. His parents were told that he may not survive birth, and that if he did, he would probably die within a few months. William cannot sit unaided or move by himself. In this film his parents talk about their daily life.
For the first year of his life William had to have someone with him throughout the night as he would stop breathing. A nurse used to come and visit two nights a week and friends of the family would come over and watch him at night. His mum talks very openly about how her other children disappeared into the woodwork as William’s illness took over family life.
William loves going to school and visiting a mobility centre to go to the sensory room. His parents talk about how their local children’s hospice is an amazing place where they can go for a break and a rest.
Ysella’s mum talks about the medical support she has to provide for her own daughter. Ysella doesn’t have a medical diagnosis and doctors do not know how long she will live.
She was born by normal delivery but her mum noticed at 12 months old that she was slow to develop and couldn’t sit up on her own. Ysella’s mum explains how she has had to fight for support and respite. She now has someone come in two nights a week to help and gets Saturdays off to spend with her three boys.
This project was funded by the Department of Health (England) in 2011 as part of the £30 million funding programme for children’s palliative care.