Max's Story

Max, aged 8, was diagnosed with a GRIN2D-related disorder and epilepsy. GRIN2D-related disorders can cause a range of neurodevelopmental conditions, with the symptoms a child experiences and the severity of the disorder varying widely. Max is unable to walk or talk and is dependent on a tube for feeding. He is also registered blind and suffers regular seizures. Max and foster mum Suzannah are supported by Roald Dahl Nurse, Lisa. Suzannah says: ‘It’s hard to put into words what Lisa means to us. She is the foundation that holds so many things together for us.’

Night Care Support  Lisa noticed that Suzannah was sleeping on the floor of Max’s room at night so that she could get to him. Lisa knew this wasn’t sustainable for the family and helped get night care support for Max; this means that for four nights a week, Suzannah gets some sleep.

Coordination of Care Due to Max’s complex conditions, the family communicate with multiple specialists weekly.   This is extremely time consuming for the family. Lisa is on hand to coordinate all that care so that Suzannah does not have to manage it alone.

Suzannah says, 'Our Roald Dahl Nurse has never let us down. Lisa has taken us from a place where we were isolated and struggling to get on top of our health to a place where we know we are going to be OK.  Max, Suzannah, and their Roald Dahl Nurse Lisa feature in our BBC Lifeline Appeal airing on BBC One on the 26th Feb at 1.50 pm. Watch our appeal to meet Max and hear how Lisa supports their family. Find out more about our BBC Lifeline appeal here.