variety – the children’s charity empowering families of children with special needs
spectacular live entertainment and heartwarming stories will highlight variety show of hearts telethon on global bc feb. 9.
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johannes jongbloets, right, seen here during his family's appearance on 980 cknw’s the lynda steele show, has a rare, severe form of hemophilia. variety – the children's charity has provided johannes with medical devices that make his life easier.
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variety – the children’s charity
this story was created by content works, postmedia’s commercial content division, on behalf of a client.
by g. marion johnsonwhen children have health issues, their parents will do anything to help—and it’s heart-wrenching when they can’t. burnaby dad jamie jongbloets can relate: both of his kids live with serious medical conditions.johannes, 15, has a rare, severe form of hemophilia. after he was diagnosed at six months old, he had to have surgery to remove clotted blood from his spinal column. since then, the teen has experienced bleeds so serious that his ankle joints have been damaged, leading to extreme arthritic pain.jongbloets’ 11-year-old daughter, parker, was two years old when the family learned she has type 1 diabetes. the disease requires regular, ever-changing doses of life-saving insulin.the challenges associated with the children’s conditions have been daunting. however, variety – the children’s charity has supported the jongbloets along the way.“johannes’s first major bleed was something that was not expected,” jongbloets says. “he wouldn’t stop screaming. he had to have nine vertebrae removed to dig out all the clotted blood in the spinal column then replaced. the pressure on the spinal cord was leading to paralysis.”variety stepped in after that gruelling operation, providing johannes with a neck and back brace for recovery. it later gave the boy orthotics.
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more recently, johannes was in need of a wheelchair to replace the second-hand one that was missing an armrest and didn’t have proper brakes. the charity provided him with a new, customized chair. he can elevate his legs, which is vital during bleeding.parker has become accustomed to life with the routine administration of insulin. variety provided her with a continuous glucose monitor, which enables easy monitoring of her blood-globose levels day and night. “it has made a world of difference to both of us,” jongbloets says.the medical devices that help make daily life somewhat easier for the kids are expensive and not covered by the provincial government. variety’s support of the family has proven invaluable.johannes’s customized wheelchair allows him to be more comfortable and even carefree. “it gave him a lot of power over his condition,” jongbloets says. “to see him in power really empowered me.
“i myself have suffered anxiety and depression, and variety quite literally saved me,” he adds. “it is so incredibly humbling to be part of that family,”variety supports families who have children with special needs province-wide. on feb. 9, variety – the children’s charity and global bc will host the 54th annual variety show of hearts telethon, broadcasting live from the hard rock casino vancouver.the iconic event will air from 9:30 am to 5:30 pm and can be streamed at globalnews.ca/bc.“the children and families that we’re able to help are truly inspiring,” says cally wesson, variety bc ceo. “we’re so excited to once again be partnering with global bc for what is sure to be a sunday filled with not only spectacular live entertainment but heartwarming stories along with maybe a surprise or two as well.”this story was created by content works, postmedia’s commercial content division, on behalf of variety – the children’s charity.
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