CADEN Chapman fit a lot of life into five years with his beloved family.
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Bec and Beau Chapman’s late son was imaginative, cheeky, charismatic and adored zooming his toy cars around the floor with friends.
“I miss his personality, his cuddles – he was such a friendly little boy,” said Mrs Chapman, of Clarence Town.
“Spending a lot of time in hospital he had to know how to have a bit of fun.”
The Chapmans have used their son’s positive attitude as inspiration for The Bloody Long Walk, a 35 kilometre trek from Palm Beach to Manly Beach on Sunday to raise awareness about and fund research into mitochondrial disease.
Mrs Chapman said she had never heard of the debilitating disease, which claimed the life of her five year old son nine days before Christmas 2014, until her family received his diagnosis.
The potentially fatal disorder is the second most commonly diagnosed genetic disease after cystic fibrosis.
“We still see doctors and nurses who don’t know what mitochondrial disease is – and that’s scary when they’re treating your child,” she said.
“We Googled it when we got home, which was the worst thing we could have done. When we read there’s no treatment other than vitamins and no cure – we knew then it was serious.”
Mrs Chapman said she realised something was wrong when Caden was 12 months old and one side of his body went weak.
One doctor told her his arm was broken and another alleged mistreatment, before she brought him in October 2010 to John Hunter Hospital’s emergency department, where an MRI revealed white spots on his brain stem.
Caden had a muscle, liver and skin biopsy in February 2011 and received his diagnosis a few months later.
“We tried to enjoy the days we had more,” she said. “We hoped he would improve.
“I think we knew he was going to die, but we did not know when. We started grieving, but then we had to put that to the back of our minds and think about the now. ‘While he’s here let’s enjoy every day we have with him’.
“A lot of people did not realise how sick he was, because he was always smiling.”
Caden will not be waiting for his parents at the finish line this year, but his legacy endures.
“I do the walk for him and to save another family going through what Caden went through and what we went through, because it’s not fair.”