BOZEMAN-- It was a normal summer morning in August of last year, when Bozeman resident Chantel Schieffer woke up to her four-year-old son Dax, having a nosebleed.
It was something the doctors had warned her and her husband, also named Dax, to watch out for; Since he was born prematurely in 2012, doctors had discovered that Dax had low blood platelet counts, and he faced some challenges with his speech and motor skills.
But they didn’t have many answers.
So when the nosebleed persisted that day, Chantel and Dax took their son to Kalispell, where Montana’s only Pediatric Hematologist resides.
“It was really scary we didn’t know what was happening, what was causing this decline in his blood stability, so we were kind of settled in for months of tests trying to figure out what was going on and then got a diagnosis about a year ago, November of last year,” said Chantel Schieffer.
That diagnosis one year ago, was Dyskeratosis Congenita, a rare genetic disorder that causes bone marrow failure; The chances of being born with DKC are literally one in a million.
“We determined pretty quickly that he was going to require a bone marrow transplant, and so we had to begin the process of learning about that and beginning that part of the journey,” said Dax Sr.
That part of the journey would take them to Seattle Children’s hospital, for a five month-month stay.
Chantel took to blogging to share her family’s story, documenting the entire process - And it opened up doors she could have never imagined.
“When we got this diagnosis and we realized that he was severely medically challenged, and it was a scary time for us that we wanted to kind of pull that curtain back and share our story, and the benefits from that have been tremendous,” said Chantel.
A post from Chantel’s blog before Dax’s diagnosis, read; “I sat on this Alpine Lake beach eating Huckleberry Cobbler and whispered, ‘Hold me up,’ to these mountains as storm clouds rolled in. I had been under a storm cloud of my own in recent days; Thirty-five miles away, my son was hospitalized with apparent bone marrow failure.”
Enter Team Dax; A group of friends and family from across the state who set out to send the Scheiffers to Seattle with a helping hand.
Team Dax raised almost $70,000 for the Schieffers’ trip to Seattle; But before heading out, the Schieffers would receive the most positive news yet - A marrow match had been found for their son.
In February, Dax had received more than 100 matches from marrow donors across the country, through a registry called Be The Match.
Doctors in Seattle sorted through the donors and selected the best match for Dax: A 40-year-old woman from somewhere in the United States.
Due to policy, the Schieffers don’t know the name of their bone marrow hero, but they can communicate with her through writing.
“We are able to communicate with her through letters through the registry, so she’s reached out to us and we’ve been able to reach back and it’s pretty powerful what she’s done for our family, and you can sense from her letters, it’s pretty powerful for her, too,” said Dax senior.
The Schieffer’s reached Seattle on May first, and Dax received his transplant on June 26th.
VIDEO EXTRA: SPIDER-MAN VISITS DAX
That’s when the final countdown began - 100 days until they could return home, the promise of going home to the place they love.
“This is our home, this is everything to us. Next to the health of our son, I think Montana is the most important thing to us,” said Chantel.
The Schieffers arrived home to Bozeman in early October, a place little Dax hadn’t seen in a long time.
“Dax hadn’t been here in over five months, and he walked in and just immediately started to recognize, ‘This is where we have dinner, and this is where I play, and this is where we read books,’” Chantel said. “So just kind of watching him familiarize himself was his home was really special.”
There have been some major adjustments; Dax has to stay in isolation inside his home for one year, as his body adjusts to his new marrow.
But Dax is just a normal five-year-old kid; He loves cars and the Nickelodeon show, ‘Paw Patrol,’ and he even gets to participate in his kindergarten classes, thanks to a robot that lets him watch during class time.
Though the journey to recovery isn’t over yet, their five-year-old son has taught Chantel and Dax a lot about how to go through life.
“Every day is a gift, and we all have challenges and how we face those challenges, I think is the most important thing of all, and like my son, who is happy in every moment, I think that’s the biggest lesson that I’ve learned through this,” Chantel said.