In his short life, Joshua King became in many ways, the face of cystic fibrosis in the city.
Despite the fatal respiratory illness, King was still a vibrant, active youngster who found joy in activities like swimming, baseball, hockey, cross-country skiing and taekwondo.
The 11-year-old lost his battle with the genetic illness in January 2012, but his memory has fueled efforts behind this year’s Shinerama campaign.
Krista Kelly is one of the co-ordinators for this year’s local campaign to be held on Sept. 5.
The second-year student at the Western Regional School of Nursing is friends with King’s mother, Annmarie, and knew the boy well.
She said her young friend is constantly on her mind as she and fellow co-ordinator Jillian Hutchinson plan the event.
It isn’t the first time Joshua spurred her to action against the illness since she helped raise over $5,300 to help with travel expenses when the Kings travelled to Toronto for Joshua’s lung transplant three years ago.
“She’s like a big sister to me,” Kelly said of King. “When I saw his health decline and him getting put on oxygen, right away I knew I had to do something for them.”
Herself a mother of two boys, Kelly said there is no cure for the illness in which a thick build-up of mucus on the lungs causes severe breathing problems, so proceeds from the campaign go toward helping manage the illness.
King said her son was diagnosed with the disease when he was 18-months old and his involvement in sports helped him better deal with the mucus build-up.
The current life expectancy for someone diagnosed with cystic fibrosis is around 30 years of age, but just a few short years ago a child with the illness would be lucky to live until kindergarten.
There are now more adults living in the province with the disease than children, a sign of the advances in care.
Despite the best efforts of his parents, frequent trips to clinics in Gander and St. John’s, large daily doses of medication and his zest for life, Joshua still lost his struggle just before his 12th birthday.
King said campaigns such as Shinerama are a beacon of hope for families forced to face the disease in the future.
“Nobody should lose their child this way,” King said. “We did what we could for him, it’s just his was more severe. If this helps another child with more research and care, that would be wonderful.”
Kelly and Hutchinson have already helped organize a Shinerama event during Canada Day and are hoping to raise $5,500 on Shine Day where volunteers will be at various locations around the city seeking donations from the public.