It’s currently Shark Week on TV and one Squamish teen is sure to be watching each episode intently.
Aspiring marine biologist and shark-aficionado Zach Jordan was recently able to see some of the rare creatures up close in the waters off Miami.
In April, the Children’s Wish Foundation of Canada granted Jordan, 14, his wish to participate in shark research with PhD candidate David Shiffman of the popular Southern Fried Science blog.
Jordan suffers from a rare and serious set of symptoms labeled dysautonomia and
postural orthostatic tachycardia syndrome (POTS), his mom Isabel explained, and his prognosis is unclear.
He has suffered from a facial tumour, limited muscle control and a host of other daily issues such as headaches and constant nausea.
“It makes it hard for him to function on a day-to-day level,” she said.
Puberty exacerbated the teen’s symptoms to the point he wasn’t able to attend school for much of Grade 9 this year.
The granting of the wish, therefore, was a bright spot in an otherwise not great period.
Jordan’s mother didn’t tell her son he had been nominated by a local family to receive a wish until everything was set.
“When you don’t have a diagnosis you are pretty used to falling through cracks and fighting for things for yourself,” she said. “We’re pretty used to doing things on our own so [Zach] almost couldn’t believe it. He almost didn’t understand.”
The trip was beyond anything the family could have imagined, she said.
Jordan has wanted to be a marine biologist since he was about eight, so it was very exciting to put a research tag on a great hammerhead (Sphyrna mokarran). The little yellow identification tag with a phone number of the lab was clipped underneath the dorsal fin.
“It was amazing…. Sharks are beautiful creatures,” Jordan recalled late last week from his home in Squamish, adding it is important sharks are protected, “not just for them, but for the entire food chain that relies on them.”
He didn’t feel well on the trip – heat and stimulation quickly exhaust him – so he rested in the hotel to be able to have the energy for the day tagging sharks. Out on the water a few miles off the coast he didn’t think about his symptoms, he said, and he was able to enjoy the day.
“They made sure to warn us 100 per cent of shark bites come from the head,” Jordan said with a long and hearty laugh.
The research they did was serious, Jordan noted. The scientists brought along a centrifuge, Jordan explained, his voice rising with excitement, and they took small tissue samples to see what the sharks ate.
Children’s Wish took care of everything. Representatives arranged things with Shiffman, flew the family down to Miami and handled all the details, from transporting his specialized wheelchair, hotel accommodations and car rental to helping put in place Jordan’s medical treatment while he was in Florida.
Shiffman also went above and beyond, arranging to meet them for dinner in addition to taking Jordan and other family members along on the boat to do the research.
“He is a really nice person,” said Jordan. “He just invited us, it wasn’t part of the wish.”
When one child is very sick, taking vacations as a family is tough, Jordan’s mother said, so the trip was special for all of them.
Jordan’s sister Evie and parents went on the trip and other relatives were able to travel along with the family.
“We like to go away, we like to do stuff, we like to have adventures, but it has been really hard – it has been really, really difficult, and I think that was the best part of it for my husband and I having a new adventure together, the four of us.”
Due to their experience navigating the medical system with their son, Jordan’s parents co-founded the Rare Disease Foundation in 2008, to help other families. Visit rarediseasefoundation.org.