In an effort to save enough money for her son’s long-awaited doctor’s appointment in Calgary, Katie Handley, a South Surrey resident, has reluctantly turned to the community for help, via social media.
Handley’s son, Jakob-Anthony, 13, has Noonan syndrome, which he was diagnosed with in June 2008 at just six months old. Noonan syndrome is a disorder that prevents normal development in various areas of the body and is caused by a genetic mutation. So far, he has undergone 15 surgeries.
Handley, who is a stay-at-home mom to Jakob-Anthony and her daughter, Emma-Leigh, 7, said that the family is originally from Calgary and she prefers to have her son’s procedures done by the doctors who are familiar with him and his condition.
In order to help pay for the trip, she is asking for donations of bottles and cans, which she can return for the deposits.
In her request, posted to The White Rock/South Surrey Community Group Facebook-page on April 27, she explained that she will be driving to Calgary for Jakob’s doctor’s appointment, so he can be placed on a list for another surgery.
“I didn’t want to take from anyone else,” she said, adding that she does not want donations of cash or to take from people who donate their recyclables to others. She is only asking for cans and bottles that would otherwise be thrown away.
Handley is new to B.C. and does not know that many people in the province, let alone South Surrey, and she said she was not expecting the response she’s already received, which she described as overwhelming.
“The community has honestly come together so well for us. I can’t be more grateful and thankful for everything everyone’s done,” Handley said.
Thanks to those who’ve donated, Handley said she is able to cover almost all of the gas money that she will need for the round-trip. That’s something she wasn’t expecting.
“I wasn’t sure how open people would be about sharing, but I’ve even had people give me bags of bottles and then give me an envelope of money with it.”
Symptoms of Jakob’s condition include distinctive facial features, heart defects, bleeding issues, growth problems and more. Pulmonary stenosis — a congenital heart defect — is commonly found in patients with Noonan syndrome. In Jakob’s case, the valve that pumps blood out of his heart does not work properly. Right after he was born, he was rushed to the NICU and diagnosed with the heart condition.
Jakob’s Noonan syndrome was not discovered until he was six months old because that was the earliest he was able to see a geneticist. It is now time for Jakob’s 16th surgery, which is crucial to fix his droopy eyelid – another symptom of Noonan syndrome.
If he doesn’t have the surgery, his eyelids will continue to drop and will eventually block his vision completely, causing blindness.
Handley said that Jakob “will have to have these surgeries done forever for his eyes,” adding that the procedure is not a solution, but a temporary fix until the elastic put into his lids begin to inevitably loosen over time.
Heart surgery could also be in Jakob’s future, even though the organ is stable at the moment. But with Noonan syndrome, symptoms change when the patient enters puberty, as Jakob is.
How long the trip will last is still unknown, as Jakob also needs to undergo tests before the surgery. He should have been put on the wait-list in February, said his mom, but the appointment to get on the list was rescheduled for June 2.
The family is hoping that he will be placed on an emergency wait-list so his treatment is not delayed much longer.
Handley, her two children and their two Chihuahuas will leave for Calgary on Thursday, May 26. She is still collecting recyclables until Wednesday from those interested in donating. Those who have spare cans or bottles can call Handley at 403-860-9664 or private message her through Facebook at www.facebook.com/katie.handley.
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