Tiny orange flags tethered to ice-fishing traps, scattered groups of people soaking up sun from their folding chairs, a few smoky bonfires, and snowmobiles pulling shrieking kids piled into a sled—it is a classic Maine winter scene on the ice.
There is more than meets the eye at this gathering, though. A black pop up tent is an infusion tent, those chic bracelets and funky charms are medical ID tags, and every one here has a bleeding disorder, or is connected to someone with one.
I am at the annual Winter Camp put on by the Hemophilia Association of Maine and the New England Hemophilia Association for an weekend of fun and ice, and a crash course on bleeding disorders. I hear unfamiliar terms— “factor,” “big stick,” and “infusion tent.” A factor is a clotting protein, which if absent causes blood to clot at a slower rate. A big stick is an award when someone learns to self-infuse, and the infusion tent is just that, a place to go add factor (that clotting agent) to your blood. These are common, everyday words to everyone here, and one of the threads that bind them all.
“Five second rule,” someone shouts, and sure enough, there is a hamburger that flopped off the grill onto the ice. Bleeding orders may be the common ground, but the day is like any other family reunion or community get together, just kids having fun and adults connecting and swapping stories.
Tracy Gideon, co-founder of Hemophilia Alliance of Maine (HAM) and event organizer, says the shared background adds another layer of comfort for everyone. “There is no need to explain anything, or answer questions about hemophilia, we all get it because it is simply a part of our daily lives.”
A family from Cape Cod includes Misha and Dmitriy, two young boys bundled in snow gear. Their mother Alexandra is a carrier of the gene, and the boys both have hemophilia. Alexandra and her husband Vladamir came to the US as students, have decided to raise their family here, and plan to make Winter Camp an annual event. “We like the snow,” Alexandra says, “and we like to see our hemophiliac friends. We reconnect, and see how all our kids are doing.”
One rite of passage for those kids is getting the Big Stick, that award for learning how to self-infuse. This is a liberating process, giving kids independence. Victoria Kuhn, from Falmouth, Maine, says they can infuse anywhere. “…on a mountain side, in a train, and here on the ice, it just fits into life.” Infusing does not take long, maybe fifteen minutes, but fifteen minutes can seem like a long time when you are anxious to get back to the ski slope. “It is a brief quiet time, it is very zen,” Victoria says. Her son William is an avid skier, and received his big stick when he was ten years old.
Fostering independence is another component of this weekend. “We will be infusing out here on the ice,” says Rich Pezzillo, the executive director of the New England Hemophilia Association (NEHA). Rich, like everyone I have spoken with, is a passionate advocate for awareness. He wants kids to see that life with hemophilia is as healthy and full as any other life. As part of Winter Camp, there was a Skype visit with Chris Bombardier. Chris is a mountaineer who has climbed the highest peak on every continent, a challenge called the Seven Summits, in part to spread encouragement to others with bleeding disorders.
Winter Camp is all about getting out and getting active. Carol Belmont and her daughter travelled from New Hampshire. They had never been ice-fishing before. “They showed us everything, from drilling the hole to deciding how deep to put our line. That depends on what you are fishing for. And the ice is sixteen inches thick!” The excitement in her voice is evident, and you know they will be back next year.
Jill Packard, the other co-founder of HAM, says “we needed to get the kids and families affected by bleeding disorders out on the ice and connecting with all that Maine’s natural world has to offer.” In addition to ice-fishing there is snow shoeing, story telling, a nightwalk, and s’mores around the bonfire.
The weekend is a classic Maine winter weekend, but the bonds that connect everyone go blood deep.
Winter Camp is for all ages, and is held on Camp Mechuwana in Winthrop, Maine on Free Family Fishing in February.
For more information:
Hemophilia Alliance of Maine (HAM)
New England Hemophilia Association (NEHA)
You can also support HAM by purchasing a red tip-up from Heritage Tackle & Gear, who will donate 10% of the proceeds to HAM: