Jordan has a lot of things she wants to see and do. Every adventure is a bit easier thanks to the first compact all-in-one catheter and bag solution.
It sometimes sounds exaggerated to say someone “lights up a room.” But when it comes to Jordan Gagnon, this is absolutely true.
With her curly hair and big smile, the 13-year-old from Edmonton has an energy that comes through in her eyes.
That energy grows even more when she talks about her Dream It Do It List—a list of all the things she wants to see and do.
Jordan is one of fewer than a hundred children worldwide with giant axonal neuropathy (GAN), a rare, inherited, progressive disorder, which affects the peripheral and central nervous systems. Jordan was diagnosed at the age of 4 and is slowly losing the functions many take for granted. So far it has taken away her ability to walk, and has impacted her lungs, eyes, brain, and fine motor skills. GAN currently has no cure and will eventually take her life.
Hope, joy and adventure are the best medicine
As it says on her family website, goingwiththegagnons.com, the best medicine they have found is to keep hope, joy and adventure alive, hence, the Dream It Do It List.
Jordan has already ticked many items off her list. Collaborate with clothing and accessory retailer, see the Eiffel tour (check), be in a commercial (check), learn to crochet (check), eat frog legs (also check).
Jordan and her mom, Christa, share her adventures on their Instagram and TikTok accounts. “Because GAN is so rare, I wanted to raise awareness,” Christa says. “And it is important to us that people can watch our story and see that where there’s a will, there’s a way.
And it is important to us that people can watch our story and see that where there’s a will, there’s a way.
“It takes some extra planning, and it is never perfect. But I hope that people look at us and say, ‘It takes a lot for them to do all that, but it doesn’t stop them’ and maybe they will step out of their comfort zone. Because there is so much to see and do in this world and so many experiences to be had.”
Christa and Jordan say they do face challenges when on their adventures, for example, even a building advertised as accessible may have steps to get inside. Before their trip to Europe, Christa called hotels to check the size of hallways and measurements of washrooms to ensure Jordan’s wheelchair could fit inside. Jordan now also uses a catheter because of the progression of her disorder. This means having to catheterize several times a day when on the go.
This used to add to the “insane amount of planning” needed for travelling or certain outings, says Christa. She had to worry about finding an accessible washroom and needed to pack several pieces of equipment. But finding the right product has made all the difference.
SpeediCath® catheters “life-changing” for ease and convenience
Jordan recently switched to the SpeediCath® Compact Set by Coloplast, an all-in-one catheter integrated with a sterile bag. They are small enough to keep in a pocket or handbag and the packaging is easy to open for people with limited hand dexterity. The catheters are pre-lubricated and instantly ready to use. They eliminate the need to connect the catheter to a urine bag, remember various pieces of equipment, or store bulky products.
“Now we don’t even need a washroom, just a private area. It takes away the stress of where I will catheterize her or how I will catheterize,” Christa says. “Everything is so easy and so portable.
“There is so much planning and so much other stuff to worry about. But I don’t even think about that part anymore. For us, it is life changing.”
Having her SpeediCath® catheters handy will help make it easier for Jordan to keep checking items off her Dream It Do It List. Already planned for this summer is an Alaskan cruise, which will be an opportunity to also check off two other items—seeing the Northern Lights and dog sledding. Because as anyone who has met Jordan knows, she will not let anything stop her. As she says, “I can do everything that everybody else does, it just looks a bit different.”
To learn more about SpeediCath® catheters and order free samples for yourself, visit coloplast.ca. Available in both male and female.
