KALISPELL — Jaxen Flores from Kalispell is an active seven-year-old boy who was diagnosed with Infantile Pompe disease at the Seattle Children's Hospital during the first year of his life
Infantile Pompe disease is a rare, inherited disease that causes muscular weakness because of high glycogen storage in muscles leading to impaired mobility and breathing problems.
“He almost died a few times because he was diagnosed pretty late. We had some doctors tell us that I was just being a new, over-concerned mother. So everything we took to them was kind of just brushed off as oh, it's just this and we'll give him this medication or whatever,” said Erin Hoch.
Jaxen’s days are filled with medical appointments, all kinds of adaptive equipment including machines to help him breathe at night, and homeschooling. Jaxen is home-schooled to keep the germ exposure to a minimum.
View a photo gallery of Jaxen Flores
“Lots of getting used to this like whole new realm of what life looks like, is it is not what you expect as a new mom or a new family. And so we've kind of adapted as he grows and try to figure out the best way for him to do things and be active,” said Hoch.
One of his favorite activities is riding his bike.
“When you can't do much as a family, it's hard to get out and do things like we used to. It's exciting when you get to move forward with something that you all love to do because he loves being on a bike but it's exhausting,” said Hoch.
Jaxen’s family has been trying to get him an adaptive bike for two years. They finally discovered the Great Bike Giveaway that allows families to raise funds or get votes to qualify to receive an adaptive bike.
Hoch decided to use Facebook as an avenue to spread the word about the fundraiser.
Her personal account was not drawing enough attention, so she posted it on the Flathead 411 page.
After just five hours of having the fundraiser posted, she received over $2,000 in donations, enough to buy a bike.
“In only five hours. And it was just like what in the world?” said Hoch.
As Jaxen grows, this bike will become even more important for him to stay active.
“There's not a lot of equipment for like bigger kids that don't have like a normal biking life, you know? So it's exciting,” said Hoch.
Jaxen is very excited to get a bike that he can use, but it has seemed like a much longer wait than two years.
“How long did you wait to get this bike?” asked Hoch.
“A million years,” said Jaxen.
The family plans to take much longer bike rides including a trip to Jaxen's favorite coffee shop.
“Holy Moly that’s a long way,” said Jaxen.
“I bet you could do it though,” said Hoch.
“Like this, whew whew whew, over here, whew whew whew,” said Jaxen.
“And if you get tired it’s got a parent handle that I can help push,” said Hoch.
“Oh, good,” said Jaxen.
It can take anywhere from five to 18 weeks to get the bike, and until then, Jaxen will continue to do all of his favorite things.
“It's been quite the journey. Are you tired, are you emotional?” said Jaxen.
“it's been a good journey. We've had a lot of ups and downs but this is it's exciting when you have something new opened up for you,” said Hoch.
“I’m happy,” said Jaxen.
