StolleryKid_Jordan

Jordan has a zest for life! With her positive attitude and outlook, Jordan approaches everything with a smile. Thanks to the experts at the Stollery Children’s Hospital, Jordan and her family have hope as she lives the life she loves.

It wasn’t until Jordan was about three years old that her parents realized something was different about her. She seemed clumsy and would drag her toes as she stomped around the house. In 2015, after nearly two years full of appointments and tests, Jordan was diagnosed with giant axonal neuropathy (GAN), a rare genetic condition which progressively cuts off all nervous function in her body. One of only 75 kids worldwide with GAN, Jordan has gone from walking with minimal assistance to now being completely reliant on her wheelchair. In addition to GAN, Jordan has also been diagnosed with scoliosis. In 2019, Jordan had rods placed in her spine to prevent her scoliosis from worsening. Jordan’s condition adds extra complications to any surgery, with her scoliosis surgery keeping her at the Stollery for two full weeks, followed by her returning to the Stollery every day for an additional four weeks.

Today, Jordan is followed closely by her team at the Stollery, with preclinical researchers working to design a drug to fix Jordan’s gene mutation and prolong her life. Jordan’s Stollerific team gives her family hope, and they take comfort in having the Stollery right in their backyard.

The Stollery provides us an exceptional level of care. Especially having a rare diagnosis, they are thorough, open to listening to other experts, and go above and beyond to make sure Jordan gets the best care.
– Christa, Jordan’s mom

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