As the Cops for Kids Ride tours through the Okanagan for the next 10 days, the families of those they are supporting with their ride pledges and donations are coming out to cheer on the riders.
The event fundraises for local children in need and one Penticton family, the Palmers, is particularly grateful for the help. Their daughter Charlotte, 3, was born prematurely in May 2015 at just 29 weeks. At just over the age of one, she was diagnosed with Mirage Syndrome, a rare genetic condition.
While the genetic testing performed on Charlotte at birth in the NICU didn’t bring any results, a second round of testing was done when she at the B.C. Children’s Hospital for five and a half months, which revealed her condition. According to Christina, just months prior to her diagnosis, a Japanese researcher had published a paper outlining the symptoms of Mirage Syndrome and the gene associated with it. Charlotte was the first person in Canada to be diagnosed in Canada with this syndrome.
There have since been two been more diagnosis’s of the syndrome in Canada, all at the B.C. Children’s Hospital. Sadly, one of the patients with the condition has died, leaving just two in Canada living with condition — Charlotte being one of them.
“A lot of the kids (with this syndrome) have a high mortality rate under the age of two. Most of these kids pass away due to complications with Mirage, whether it’s an infection, or a lot of the kids develop cancer. They also have issues with their feeding, so we honestly didn’t know that we would get here,” said Christina.
Christina says a lot of Charlotte’s treatment plan was developed by networking with other families around the world that have a member with Mirage Syndrome to find out what has been successful for them. She’s grateful her family resides in Canada where Charlotte has access to top medical care.
The Cops for Kids Ride assists Charlotte’s family in covering the costs associated with her medical care, such as in-home equipment, hospital trips and accommodations, etc. For example, Charlotte is hooked up to a BiPAP machine at night to ensure she is breathing properly. If she is not, the machine can open her airway and initiate a breath for her.
“Charlotte has spent over two years in hospital, most of it in Vancouver. As a family, things start to add up with expenses,” said Christina. “You know, you’ve got food bills, travel costs, accommodations and such like — and Cops for Kids has been able to help with those expenses.”
|Riders and families pose for a group picture at the Penticton stop of the 2018 Cops for Kids Ride. This is the end of the first day of what will be a ten-day trek throughout the Okanagan for the cyclers. Jordyn Thomson/Western News|
The Palmers’ involvement with the Cops for Kids charity actually predates Charlotte’s birth as Christina is an RCMP officer out of Osoyoos and frequently rode in the Cops for Kids Ride as a volunteer. She is happy to go and show her support for this year’s riders at the Penticton stop on Sept. 14.
“I was happy to go around on the ride and see the family’s that we were helping out,” said Christina. “Having been on that other end, when you’re on the bike and you get to see that big crowd of people welcome you into communities, it pumps you up.”
With the help of amazing medical care and charities like Cops for Kids, Charlotte has been given the chance to live her life.
“We don’t know how long we have with Charlotte, obviously we want her to have a long life-expectancy. But she has come so far, when she was little we didn’t expect her to be able to do things like lift her head up or roll over and sit up,” said Christina. “Now she’s walking with a walker, she can play and interact with her brother, and she has a cute little personality.”
|Joffrey Lalonde and Sophie Fillion with their 5-month-old daughter Cloe at the Penticton stop for the Cops for Kids Ride. The charity helped Fillion with hospital visits and stays when she was pregnant with Cloe. Jordyn Thomson/Western News|
Christina and her family would like to thank all the families and police officers involved with the Cops for Kids Ride and charity. Charlotte is just one of four kids who receives funding from this event.
“It definitely takes a community when you have a sick child. They become a part of your family, rather than an organization in the background,” said Christina. “They care about us and they care about the other kids, so we just want to see them have a successful ride and power through those hills.”
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Jordyn Thomson | Reporter
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