A PLUCKY schoolgirl has launched a one-woman campaign to help the hospital heart unit which saved her baby brother's life.
Sonny-Lee Cook was born by emergency Caesarean section at Colchester General Hospital on December 12.
Scans had already revealed a problem with his kidneys.
But he was also suffering from critical congenital heart disease which had restricted his growth but gone undetected.
Mum Danell Dreelan, 30, said: "It was a shock to be told he was as ill as he was.
"Then I was told he was too small and struggling to survive.
"The next day I was told he had very serious heart disease."
"I was on a different planet.
"My whole world had been ripped apart. I had expected to have a baby and take it home, but it didn't work like that.
"They didn't know if he was going to survive."
- ONE IN A MILLION: Danell with baby Sonny-Lee
The tot weighed just 3lb 4oz when he was born eight weeks early with rare hypoplastic right heart syndrome.
The incurable condition means the right side of his heart is underdeveloped and malformed Sonny-Lee was put in the neo-natal intensive care unit and later rushed to the Great Brompton Hospital in London by ambulance with security guard dad Lee, 36.
Danell couldn't go with him because she had just had surgery.
She discharged herself from hospital and went down to London the next day.
Sonny-Lee needed a catheter inserted up through his groin and into his heart.
"By the time I got there my son had already had one cardio catheter operation but unfortunately it didn't work because he was too small," said Danell.
"He ended up stayed in hospital for ten weeks."
A second operation in January was successful until Sonny-Lee suffered a cardiac arrest in the operating theatre.
Danell said: "Dr Rigby at the Royal Brompton saved my son's life.
"His exact words to me were Sonny-Lee has had a rubbish time in theatre but he's coming up.
"It was touch and go and he lost him once, but after 11 minutes his heart started to show signs of beating which told him not to give up."
Sonny-Lee is now four and a half months old and back at home in Jaywick.
He weighs just 8lb 7oz.
He is still facing open heart surgery and will need a heart transplant one day.
Danell said: "Nurses come into our home twice a week and he is on a heart monitor at night. If his oxygen levels is too low for too long we know we have to get him to hospital.
"The work the neonatal team do with him is amazing."
Sonny-Lee's big sister Bobbie-Jean, aged nine, is now doing everything she can to thank the Royal Brompton for saving him.
- BIG SISTER: Bobbie-Jean and Sonny-Lee
The hospital's world-leading congenital heart disease research team and children’s intensive care unit are threatened with closure.
"She was in the room when we were told about his illness," said her mum.
"She asked me to promise that I wouldn't let him die.
"I said I couldn't promise that but would fight to bring him home."
"Bobbie-Jean and my six-year-old son Billy travelled backwards and forwards to the Royal Brompton to see their brother "While I was in hospital Bobbie-Jean wrote a letter to her headteacher at Brightlingsea Primary about raising money to try to save her baby brother's hospital.
"Her school held a Purple Power Day where they all wore purple - the Royal Brompton's colour - and raised a lot of money."
- CLOSE FAMILY: Bobbie-Jean and Billy, aged six, with Sonny-Lee
Bobbie-Jean is holding auctions and planning a fun day to boost the appeal.
The youngster has also played a major role helping her mother in the months since her baby brother was born.
"She tells me it's going to be fine, it's going to be okay - she's kept me going," said Danell.
"She knows every single medication he's on and what signs of his illness to look for.
"She went into school every single day her brother was in hospital but no one even knew he was ill. She just got on with it.
"Then she told them her brother nearly died."
Danell knows Sonny-Lee will need a transplant one day.
Until then she is determined he has the best quality of life possible.
"I want to fight for the heart he already has," she said.
"He looks like a normal baby, but inside he's a mess.
"But he's proved you can have a really rubbish heart and still be here to tell the tale."