IT wasn’t until Max Dickinson was almost a year old that his family first noticed something was wrong.

His head would nod sporadically while he was sat in his high chair. Initially their concerns were dismissed, but one day it worsened and he was referred to specialists in Newcastle.

He was diagnosed with a rare genetic condition that has significantly affected his development and left him with serious health issues, including epilepsy.

“To start with it was all a blur. I didn’t really understand what the doctors were saying,” said mum, Gillian Blythe.

“It was such an unknown. We had to do a lot of research. We stayed in Newcastle for the first few weeks. We managed to get him home for his first birthday.”

It was the start of a childhood full of hospital appointments for Max, of Weardale Road in Carlisle.

Gillian said he has complex health issues and needs round the clock care. “It’s pretty full on. He is non-verbal and non-mobile, so he can’t really do anything by himself. He has to be a fed through a tube and is still in nappies,” she said.

But despite his problems, Max is a happy and well-loved little boy.

His mum and dad, Peter Dickinson, have grown to understand how he is feeling and his big sister Eve Styth dotes on him.

“At one point we thought he couldn’t see or hear us. He was in a world of his own, but now we think that was the medication, he was on such a strong dose.

“For a while we weren’t getting any smiles and giggles but these are coming back now,” Gillian added.

They are hopeful they finally have Max’s seizures under control, and he now attends the Jigsaw children’s hospice and James Rennie School.

Gillian said the hospice has proved a lifeline for them, allowing the family to get some much needed respite, knowing Max is happy and his complex needs are cared for.

“He’s been going for the best part of a year now and he loves it.

“It’s a bit of time for Eve. You do get a bit of mum guilt. We have to spend so much time with Max and she’s brilliant with him, but I do worry that she’s missing out. It’s nice just to be able to take her to the cinema.

“It also means we get a full night’s sleep, so you feel refreshed ready for him coming back. It’s made a massive difference,” she said.