Like most other kids her age, Kandis Braid should be outside playing and exploring the world around her. Yet for the two-and-a-half year old Elmira resident, being active and involved is sometimes painfully difficult.
The blond-haired girl suffers from what doctors call systemic-onset juvenile arthritis. Juvenile arthritis, or JA, is one of the most common chronic illnesses affecting children – according to the Arthritis Society, one in 1,000 children under 16 has the affliction.
Yet the systemic-onset form Kandis suffers from is a rarer and more severe type of JA. It occurs in about 20 per cent of all children with JA and affects both boys and girls equally. Kandis’ problem began last August when she started complaining of joint pain and was not able to walk on her own for extended periods of time.
Four days of tests later at the children’s hospital at London Health Sciences Centre, and they finally had their answer.
The diagnosis of arthritis was actually a relief for Kandis’ parents, Bailey Palmer and Ron Braid, as doctors had completed a wide range of tests including a bone marrow tap to check for signs of Leukemia, unsure of what was causing her such pain.
“It was a relief, but then at the same time there was the medication she needed and she had to go for physiotherapy,” said Bailey. “So it was two seconds of relief followed by being overwhelmed with everything else.”
On May 25 the family will be holding a fundraiser called Kickin’ it for Kandis at Lions Hall in Elmira to raise money for JA research and to help offset some of their own costs. The event includes a family fun portion including a bouncy castle, cotton candy, face painting, balloons and a barbecue. There will also be a 19+ dance later in the evening and a raffle table with a wide range of prizes, including a gas-powered lawn mower and weed-eater.
“It will have a stag-and-doe type feel to it so we can include all of our friends,” said Bailey. “Not all of our friends have kids and they want to help out so they are more inclined to come to the later one.”
Kandis is currently taking two drugs for her pain, prednisone and tocilizumab, and her parents are trying to wean her off of the prednisone because of the harsh side effects, including swelling, and they say the new medication is working well. The family receives funding to cover the $25,000 annual cost of the tocilizumab but their insurer is trying to avoid paying for their other drug prescriptions even though the couple is covered under their insurance policy.
They must also pay about $350 every three months for the tocilizumab, as well as their incremental costs of travelling to London and missing work.
Bailey and Ron want to donate the other half of all their proceeds they collect to the children’s hospital which has a partnership with the University of Western. They want to raise $7,500 for a three-year bursary for someone studying JA or who is working towards finding a cure.
Kickin’ it for Kandis is on May 25 from 5 pm to 1 am at Lions Hall. Tickets are $10 for adults, $5 for children, and $25 for a family. Tickets can be ordered ahead of time or bought at the door. For more information email firstname.lastname@example.org or visit http://kandisjajourney.blogspot.ca/.