Jess, who was featured in the BBC Children in Need appeal film on Friday 16 November, is cared for by Rennie Grove's Children's Hospice at Home Nurses.
When Jess's mum Sam noticed something strange happening to her 13 month old daughter’s eyes, she didn’t think too much of it at first, but within a week her precious baby, Jess, was in hospital undergoing surgery on a brain tumour. Sam sat down with us to tell Jess’s story and how our Hospice at Home team has helped her family over the last seven years.
“The weekly visit from the Children’s Hospice at Home nurse is a huge help. She comes after school and helps out with Jess, giving me the chance to be with Emily and Harriet. I can’t leave Jess with many people because her condition is so unpredictable, so it’s really reassuring knowing that someone who is medically trained is there to help out.
“All the admin that goes with having a poorly child can also be a challenge and Rennie Grove will always offer help and advice with anything from schooling and medical appointments to applying for grants to help with our building extension.
“We also really enjoy the Family Fun Days run for the children in Rennie Grove’s care. They give Harriet a chance to meet other siblings and Jess to meet other children who are poorly and Ben and I have made some lovely friends through Rennie Grove.
“Because of the unpredictability of Jess’s condition, it is hard to know what the future looks like. She should lead a relatively happy life but she will always have challenges. She will be on lifelong medication and because of the part of her brain that is damaged, she won’t be able to have children or go through puberty naturally. The major risk for Jess though is a full-blown stroke and it’s all about getting the balance right, especially with her medication.
“Having the help and support of the Children’s Hospice at Home nurses has been so important over the years. Just to have someone there who knows and understands has been invaluable. With Rennie Grove there are no labels, Jess is just Jess, and the nurses have really helped me adopt this attitude too. Whether we are at home or in hospital, day or night, I know I can call and that is so reassuring.”
Read her story in full here.