WHEN Sonny-Lee Cook was born eight weeks prematurely, he weighed little more than a bag of sugar.

He arrived with the rare hypoplastic right heart syndrome, an incurable condition leaving the right side of his heart underdeveloped and malformed.

Sonny-Lee was taken to the neo-natal intensive care unit in Colchester and later whisked off to Royal Brompton Hospital, in London.

Mum Danell was recovering from surgery, but discharged herself from hospital and travelled to London the next day.

Her darling baby went on to spend the first seven months of his life in hospital.

Sonny Lee’s sister, Bobbie-Jean, was only nine at the time, but she noticed the impact of a lengthy long-distance hospital stay on her embattled parents.

The seed of an idea was planted.

Bobbie-Jean, now 12, and her aunt Destiny Hannam, 15, decided to start a charity supporting families enduring lengthy hospital stays.

They put on fundraisers and use the cash to put together care packages and supportive messages.

“I understand from a personal point of view what a difference it makes,” said Danell.

“With the adults it’s shower wash, conditioner and everything that you might need, with the child it’s things like baby lotion and nappies.

“Every box has a supportive message urging parents to be brave during the difficult days in hospital.”

Now the charity, Sonny’s Army, is registered with HM Revenue and Customs and has helped almost 300 families. The pair won in the ‘outstanding achievement’ category at the recent Tendring Youth Awards.

Danell credits a very special teacher with motivating the girls to work on expanding the cause.

“There is one particular teacher at the Colne Community School, Freddie Young, who has gone above and beyond,” she said.

“He essentially made them believe they could achieve this.

“Since they told him about the charity he has been their biggest supporter.”

The remarkable effort is also testament to the girls’ steely attitude.

Danell said: “They are young girls, but if you sit with them and talk about Sonny’s Army everything changes.

“Bobbie-Jean is normally a regular 12-year-old girl, she loves Little Mix and the colour pink, but as Sonny’s big sister she is no longer that little girl.

"She is so grown up.

“It’s almost quite difficult to see.

“The hardest part is they are so medically aware of so many different conditions and the things Sonny will have to face before they even happen.”

Closer to home, Sonny-Lee may constantly face an uphill struggle, but he is also enjoying a touch of good fortune.

He will start school for the first time in September.

Danell said: “He is amazing - he has got school in September.

“He’s nearly three and now he is going to Brightlingsea Primary, they are the only school that accepted him due to the strain of having to cater to his condition.

“They have been amazing making sure everything is in place.

“He’s been at home since October.

“There is chance he will have to go back in for another surgery soon, it is going to happen and we don’t have much choice.

“Unfortunately the tricuspid valve in Sonny’s heart hasn’t done what they wanted it to. It should have grown but didn’t.

“It’s a long wait. But it’s always been just one long wait since he was born.”