My young child cares for me

Young carers Jacobi (aged 9) and Aerith (aged 5) help care for their mum, Jenny who has Ehlers-Danlos syndrome. Jenny uses a wheelchair and suffers from regular pain, joint dislocations, fatigue, difficulty swallowing, regularly needing a gastric tube for feeding. 

Alongside support from extended family, Jenny relies on her daughters at home to support her with everyday needs including household chores, like laundry, making snacks, fetching things from upstairs, feeding the cats and assisting her when out. Jacobi also helps with the care of her younger sister.

Jenny says “the girls are very supportive, they think of my needs spontaneously, and show huge empathy. I do worry that they are doing too much and I want to make sure they get “child time”. I allow them not to do things if they don’t want to and set up opportunities for them to take part in community activities”

Jenny had to be clear with the hospital that her children were not to provide personal care, and until adaptations are made to her home, a paid carer is available to provide personal care, so her daughters don’t have to.