He was the little boy who loved to smile. Connor McKinney McCallion lived for just three short years, but his mum Patrice says he packed everything into those months.
The three year old was diagnosed with the extremely rare condition Niemann Pick, when he was just two years-old.
He passed away peacefully at home with his family on March 5 last year.
“Connor’s speech was behind,” said mum Patrice. “But he didn’t need words. He said it all with his smile. He smiled all day, he was so happy.”
She revealed how when Connor was born they had no idea anything was wrong.
“But Connor wasn’t hitting his milestones,” she said. “He wasn’t sitting up, walking or talking.”
He was aged two when the diagnosis of Niemann Pick came, a condition his little cousin Chloe had passed away from several years ago.
“The condition is so rare we were told it was ten million to one,” said Patrice, “and we were the first town to have two cases of the condition.”
Niemann Pick is perhaps best described as a version of motor neurone disease. A condition that attacks the muscles and nervous system.
“Connor’s case was very aggressive,” said Patrice. “The day we got the diagnosis I knew it was terminal because of Chloe. There are no words to describe how to you feel when you know your child is going to die.”
Without the help of the N.I. Children’s Hospice Patrice said the family would have been unable to cope with Connor’s illness.
“They looked after us all,” she said. “All the things you take for granted like going swimming or painting we couldn’t do them. But the Hospice made it happen. The memories we made with Connor there are so special. He loved being there. His brother Caiden loved being there too.”
After Connor’s death his dad Stephen with friends Junior and Noel decided they wanted to do something to raise money for the Children’s Hospice.
The inaugural ‘On Yer Bike’ for Connor was held last year. And this year they expect it to be bigger and better. The event is on June 20 from St Columb’s Park House to Greencastle, then the ferry to Magilligan and back. On the way there will be two vans for anyone who needs a rest.
“It’s a fun event, not a race,” said Junior. “If you don’t have a bike you can rent one from Claudy cycles. You can register on the day, just turn up at St Columb’s House on June 20 at 8.30. For more information contact Stephen on 07756482621, Junior on 07985401192 or Noel on 07730064924.
It’s amazing to see this,” said Patrice. “I am so grateful.”