How Julia’s House is helping Annabelle, and now her brother Robbie through a devastating diagnosis.

When Annabelle started having problems with her sight we thought she was going blind, which is devastating enough. But a blood test revealed something much, much worse. I was about to dish up dinner when the paediatrician phoned: Annabelle had Juevenile Battens Disease, a degenerative condition that causes blindness, seizures and dementia. Her life expectancy is late teens to early twenties.

I served up the meal, cleared up, bathed the children and waited for my husband Andy to get home from work. When he pulled into the drive I got into the car next to him and burst into tears. Since that awful day I've had many days when I just cry - why, why us?