About Rylan

When Rylan was born into this world on April 5th, 2009 he did so in such a way his parents have since referred to it as "in Rylan fashion". His mom spent over six intensive hours pushing and when little Rylan finally made his debut it was known he would take his parents on a very unexpected journey.

Turns out that Rylan had three out of the six plates of his skull fused together prematurely. This is known as Craniosynostosis (Kleeblattschadel Syndrome). In addition, he was diagnosed with Hydrocephalus, an abnormal accumulation of fluid on the brain that causes pressure build up within the skull. In Rylan's case, the Hydrocephalus was caused by the valve that went from his head to his spinal cord not forming.  

Twenty-Four hours after birth Rylan was transferred to UW Children's Hospital to have a shunt placed in his head. The family was then discharged only to return back to the hospital by ambulance within that first week due to complications from the shunt that had been placed in his head.

Over the next three months Rylan and his parents dealt with broken stitches, leaking fluid from his shunt, multiple infections, three shunt replacements and a battery of tests with each new visit. 

Fast forward a bit and Mr. Rylan began developing seizures, up to 100 per day! He was diagnosed with Lennox-Gastaut Syndrome, a hard to manage seizure disorder. His parents tried every medication in hopes that one would help manage his increasing seizures. The side effects of each of these medications were daunting; things like blindness and kidney failure. However, his parents knew that if the seizures could not be controlled they would not have a chance to give their son a "normal" life. The type of life they had dreamt about from the moment they learned they'd be parents.

Rylan's familiarity with the hospital didn't stop with shunts and seizures however, in his short 7 years he also had a number surgeries. Four shunt replacements, a second Ventriculostomy, a G-tube put in, two hip surgeries, reflux surgery in attempts to alleviate his daily vomiting and a VNS placement to help with seizures.

In true Rylan fashion he didn't let any of the challenges get him down and used each day to make his unique mark. Every one that had the honor of meeting Rylan knew he was always one of the warmest, most inspiring souls to be around. 

He was the best snuggler a friend could ever ask for and he always enjoyed being around his friends.

When Rylan would miss school for a few days (or even weeks) the teachers would tell his parents about how all the kids in class had been asking "Where is Rylan?" and "When will he be back".  His teachers would also tell his parents about how the kids would line up for miles to get the chance to be Rylan’s Buddy for the day!  This was just the type of boy Rylan was. Everyone wanted to be around him because he could always make his friends and family smile!

One of Rylan's biggest accomplishments was his ability to unite his friends and family within the running community.  You might be wondering, "How could a boy that can’t talk, walk, or even hold his own head up take up running?"  

Through a special organization that allows children like Rylan to partake in running events with the assistance of angels, aka running friends!  Jen and Adam (Rylan's parents) were introduced to this organization through their sister-in-law, Kristin. After Adam had the opportunity to run with Rylan for the first time, he knew this is what Rylan was meant to do.  Every time Rylan got in his running chair he would come alive!

To be able to see a child that had no control over his movements raise his hands in the wind was truly an incredible experience.  His eyes would widen and a huge grin just come over his face.  Out on the race course he was free. Nothing to tell him he couldn't do it.  

Over the next few years he raced in as many races as he could handle.  5k’s, 10k’s and a number of half marathons.  Many different friends and family have had the privilege to run with Rylan and share in this experience. Running allowed Rylan to have a life that his parents never could have imagined those first minutes, days or even years of his life.