Jeryn Edwards’ sons Jaxson and Joseph are happy, playful and full of life.
As their grandmother Beverley Kieken puts it, “they love each other so much. They’re always reaching for each other’s hands and they share a special bond.”
The Calgary boys also share another bond, a genetic condition called B3GALNT2. It impacts their muscle tone, balance and deteriorates the cerebellum in the brain.
The rare condition was discovered in Jaxson when he was two, after an MRI. This realization led to the discovery that their youngest, Joseph, also had the gene. Joseph also has a bleeding disorder called hemophilia, in which a person’s blood does not clot properly.
“It causes a lot of issues with their whole system,” said Edwards. “It was very hard. We searched for a long time to get an answer. They have 13 doctors between the two of them.”
While both boys cannot walk or talk, an innovative study at the Alberta Children’s Hospital is offering some hope for mobility.
“Our neurologist thought the boys would be great candidates for this study,” said Edwards. “They loved every second of this Trexo Walker. It’s a gate trainer that has attachments that attach to their legs and helps get them out of their wheelchair.”
The study, which was eight weeks long, transformed the family’s vision of what Jaxson and Joseph’s future could look like.
“It gives them independence. They felt so confident and so proud. We were able to walk with them and hold their hands,” said Edwards.
Now, the family has put together a fundraiser to try and raise the $50,000 needed to purchase one Trexo Walker that the brothers can share. The family says since so little is known about B3GALNT2, they aren’t clear on a prognosis, but know that the walker would make a massive difference in their ability to get around.
“It’s such a dream for them,” said Edwards. “It would mean everything. They would thrive with these walkers.”
Kieken adds that it will “help these boys so much with their journey towards finally walking, either on their own or with aids.”
Through it all, the brothers have each other to lean on. They love playing together, snuggling and even popping “wheelies” on their wheelchairs.
“They have each other, they are so happy, and we are constantly trying to do things to help them improve,” said Edwards.
To follow Jaxson and Joseph’s journey, head to “Strong like Jax and Joe” on Instagram and TikTok.