February 28th is World Rare Disease Day, and I would like to invite ALL of you to celebrate this special day with us!

World Rare Disease Day is a day our family wasn't aware of until Ryker was diagnosed with Joubert Syndrome in December 2015.  A rare disease is classified as one that affects fewer than 200,000 people in the United States.  Joubert Syndrome affects fewer than 1,000 people worldwide.  Ryker is among the rarest of rare!

To help celebrate World Rare Disease Day, and to show support to Ryker, and all of the patients and families affected by a rare disease, we invite you to WEAR JEANS for RARE GENES on February 28th!  Share your support for Ryker on social media with a picture of you and your friends in your jeans with the hashtag #RYKERSTRONG !

If you would like to further show support for Ryker, please consider a donation to the Joubert Syndrome Foundation, a parent-led organization who has helped our family and many like us tremendously on our journey with JS.  Donations can be made here and you can make a donation in Ryker's name.

We look forward to celebrating with you!

Chris Norton, a native of Bondurant, Iowa (just about 10 minutes from our home base in Pleasant Hill, Iowa), was a freshman football player at Luther College whose life changed in an instant when he mistimed a tackle, collided with the ball carrier's legs, and lost all feeling from the neck down.  Chris was told he had a 3% chance of ever regaining movement from the neck down.  Yet despite that fact, Chris persevered.

On an excerpt from his Foundation website, Chris states: "I could have let it define me.  But our lives aren't shaped by circumstances.  They're shaped by us.  Perseverance isn't about the physical act of standing: it's about attitude, and the ability to shape yourself in the face of adversity."

Chris and his family, through the Chris Norton Foundation, have dedicated themselves to "helping people with spinal cord and neuromuscular disabilities live their best lives."

Enter: Ryker.

If you've been following this blog, you know that when Ryker was diagnosed with Joubert Syndrome as an infant, the doctors told us not to expect him to ever crawl, walk, or talk.  But Ryker, like Chris, has persevered,

Through hard work, determination, hours of therapy, a handful of tears, and LOTS of laughter, Ryker is walking -- nearly running! -- everywhere he goes.

Our road to walking has been a tough one, and it's ongoing, but Ryker DOES NOT GIVE UP.  Amongst the multiple therapies we have encountered, one of the most beneficial to Ryker is working out in the Universal Exercise Unit at ChildServe in Johnston, Iowa.

The Universal Exercise Unit, or the "cage" as we call it, allows patients to experience standing while allowing freedom of movement and facilitating balance.  For Ryker, when he exercised in the cage he had a new sense of independence and, as a result, he was able to gain confidence with his standing which contributed greatly to his ultimate ability to walk.

How does this relate to Chris Norton?

I'm glad you asked.

In his own therapy sessions, Chris Norton utilized the UEU, and because it made such an impact on Chris' progress, the Chris Norton Foundation donated the funds to ChildServe to purchase a UEU for their facility, and our family will forever be grateful for that incredible gift.