To be told your child has an illness and will die before you do is every parent’s worst nightmare. For some families this is a reality. Pepper nurses are privileged to work with and to get to know every child and young adult they are caring for and to be invited into their homes. Here are some of their stories.
Amber Jutla, her brother Jamie and mum Caroline appeared on ITV's topical affairs programme This Morning on 17th June 2014 am to highlight Children's Hospice Week. Amber, three, has been diagnosed with Infantile Batten Disease and her family are supported by the Pepper Nurses. Children's Hospice Week is the UK's only annual awareness raising and fundraising week for children with life-limiting conditions and the services, like children's hospices, that support them.
Danielle is married to Abbey and they have 2 boys, Ross who is 13 and Benjamin who is 17.
‘We first started having Pepper Nurses 7 years ago. At first I don’t think I really understood how involved and supportive they were going to be. As time went on, I was amazed at how dedicated and kind they were.
Tim and Sally have been on a long journey with Pepper since their daughter, Sophie, was diagnosed with Sanfilippo syndrome ten years ago. Sophie lives at home with her mum, dad and 17 year old brother, William. Her developmental delay and sleep disturbance makes living with Sophie challenging, and the family have no idea what challenges may lay ahead.