OVERLAND PARK, Kan. — On the last day of February, a very special group of people have an opportunity to be seen and heard.
Rare Disease Day recognizes those with diseases that affect fewer than 1 in 2000 people, and there are thousands of diseases that meet that threshold.
I met a local family who had, and lost, a child with a rare disease. Their story of how they spent his time on earth should inspire every parent, and person.
Dax Wilder Blattner was diagnosed with Pontocerebellar Hypoplasia Type 8 in the first week of his life. His parents, Danielle and Tyson, had no indication that anything was wrong during pregnancy.
"He's the sixth case in medical literature," Danielle told me. "And that was just like, gut-wrenching. I mean, no words to describe that moment, you're in total shock."
She verbalized what many families with members who have rare diseases often feel.
"There's really no other cases to compare it to, there's not much feedback on what could happen, what's going to happen," she told me
But doctors did feel confident about one thing--telling the young parents that Dax likely wouldn't have a long life, maybe only a year.
"Trying to grasp the therapies and all the doctor appointments, and what life was going to look life, that was a hard thing to wrap our heads around," Danielle told me.
So, with their baby boy in mind, the Blattners made a big decision, literally, about what life would look like.
"What he went through everyday was equivalent to us running a marathon every day," Tyson told me. “I wouldn't want this for myself. Let's get an RV, and let's travel the nation, and show Dax what this country has to offer."
Yeah, an RV.
They wanted their little boy to see, well, everything. And Dax, at just a few months old, lived experiences that many adults never have, including spending Danielle’s first Mother’s Day at the Grand Canyon.
"The perspective changed immediately when we found out that time was limited,” Tyson said. “So every hour of every day was fantastic from the point of being able to spend time with Dax."
Danielle even published a children's book, chronicling their travels.
As for Dax, he beat many of those projections doctors gave in the first days of his life. He took more trips with his mom, dad, and baby brother. This Kansas boy even developed a love for the ocean. His parents told me that some of his happiest, and calmest, moments were at the beach.
And he touched the lives of caregivers along the way, like Katie Hoelting, a therapist with Infant/Toddler Services of Kansas. She's thinking of him, and so many more children she helps, on this Rare Disease Day.
"The words that come to mind are like grit, and strength, and beauty," Hoelting told me. “Even with their child's different abilities, they can still do all these wonderful things."
Scott Lopez echoed that sentiment. His company, Alliance Rehab and Medical Equipment, provided Dax’s family with chairs and other equipment to help him live his life.
"I think it's an opportunity for us as a community to be more accepting, and learn," Lopez told me about Rare Disease Day. "There's just more steps in life for these individuals and these families. You're not just jumping in your car and going down the road, you're loading your child in a car seat, or your wheeling them into an accessible vehicle, and tying their chair down.”
Lopez smiled as he held Danielle’s book about her son. "What this tells me,” he told me, “is it's possible."
Sadly, Dax passed away in November, just a couple of months shy of his 4th birthday. His parents are thankful for all of the 1364 days they had with him, and hoping that every family observing Rare Disease Day understands what life CAN be.
"These kids are so much more than their diagnosis," Danielle told me. “It forces you to live so much in the moment, and in the day to day, but it gives you that steadfast energy to keep going, and to give your all."
If you'd like to read more of Dax’s story, you can order the book about his big RV trip, or you can visit Danielle’s blog about his life, which has been seen in more than two dozen countries worldwide.
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