PJ Cockburn (12) died at his home in Stewart Avenue on June 15 – two days before he was due to have a starring role in the town’s gala day.
Mum Jill (43) told how the youngster had been looking forward to taking part and thanked the organisers for the tribute paid to her son last Saturday. She said: “He couldn’t believe it, he was phoning everybody saying he was going to be a guard in the gala day.
“But they kept that space open, paid tribute to him and played Flower of Scotland because that was his favourite. It was lovely. They filmed it for us.”
Along with PJ’s dad Paul (40) and sisters Hannah (17) and Aimee (14), Jill has been overwhelmed by messages of support. She added: “It’s like your heart has just been ripped out.
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“I was there 24/7. I did all his care and his dad was amazing too.
“Him and his dad would go away and have boys’ days, they went to see Rangers FC one day and liked to go to the truck fests.
“He liked to go on the lorries because his dad is a lorry driver. He used to get his haircut like Ronaldo, he loved watching him and his heroes Lionel Messi or Paul Pogba play football.”
The Linlithgow Primary pupil had gone through more than most in his short life, needing a transplant when he was only one year old.
He contracted the life-threatening CMV virus post op but once again defied the odds.
Until a few months ago he was a normal healthy child but there were further complications with his liver and kidneys.
Aunt Elaine Campbell (46) said: “He was a cheeky, charming and polite wee boy. He was always a fighter.
“He will be sorely missed because he touched so many people’s lives in so many different ways and never gave up.”
Lisa Davies, headteacher of Linlithgow Primary, said: “He was a very happy boy who loved school. His smile touched everyone.”
Jill added: “We’d just like to thank everybody in the community and further afield for all their love and support they have shown us.”
PJ’s funeral will be held at St Michael’s Church tomorrow (Saturday) at 10am.
The family have asked for mourners to wear red, white or blue. Flowers are appreciated and also a retiring collection on behalf of Birmingham Children’s Hospital and Sick Kids in Edinburgh has been requested.