How One Patient is Serving as a Voice at the MN Legislature
It’s a busy time of year for 19 year old Ryan as he juggles working full time as a customer service specialist with making regular trips to St. Paul to fulfill legislative duties. As a legislation tracker for the current caucus, he tracks bills to follow their status and spends time meeting with members of both parties – giving Ryan the opportunity to advocate for healthcare needs while also learning more about the law making process.
“I knew I wanted to be involved in legislation from a young age,” remembered Ryan. “While most kids were excited about new toys, I was excited by a new color of tie, and would go to school wearing suits most days. My dad gave me the constitution in 4th grade for my birthday.”
Through his involvement in politics, Ryan hopes to be a voice for those who often aren’t able to speak for themselves – children with medical complexities. As a man whose childhood was filled with medical care and extensive hospital stays himself, Ryan knows the role legislation and healthcare law plays in the care patients receive.
An evolving medical journey
Although Ryan was born seemingly healthy, he soon wasn’t growing at the expected rate for a baby his age – leading his mom and doctors to realize that something wasn’t right. By 6 months old, Ryan was in the hospital and incredibly weak. Health care providers weren’t sure he would live more than a week. Soon diagnosed with hypoventilation syndrome and hypotonia (extreme weakness of the muscles), Ryan had a trach until he was 2 years old and also required other respiratory care.
An evolving journey from the very beginning, doctors have been discovering new diagnoses or causes throughout Ryan’s adolescence and he has consistently exceeded the expectations many have set for him – including mobility.
“Doctors didn’t think I would be able to walk, but my brother Shane – who is 2 years older than me – wouldn’t accept that,” said Ryan. “He would get me down the stairs and then stand behind me as I climbed up them. He would take my arms and have me stand up, and at first I was jello, but eventually did it on my own. It was really him who pushed me.”
Throughout his childhood years, Ryan encountered roadblock after roadblock of hospitalizations, serious illnesses, the discovery of a missing vertebrae after a baseball injury, and respiratory diagnoses. But meeting him today, you would never know what he’s overcome – a trait largely impacted by his positivity.
“I’ve been in and out of hospitals all my life,” he mentioned. “I’d refer to it as my little vacation sometimes, because I really made a point to have a great attitude about all of it. The importance of optimism was instilled in me from a young age.”
Service at any hour – from people who care
PHS has been by Ryan’s side for most of his life, providing round-the-clock DME and respiratory care that included frequent midnight oxygen runs and BiPAP mask fittings.
“I remember one PHS clinician named Mark who came out to my house often, and one time in particular came by because I needed a new BiPAP mask,” remembered Ryan. “He had me try on multiple masks until I found the perfect fit, which ended up being the first one I tried on. RTs would regularly come by to ask what my needs were, how they could assist me, and give me options to determine what would be best for me.
“That kind of dialogue is amazing. That quality of care where you can have the patience and care to help someone find exactly what they need is irreplaceable.”
We are proud to have helped Ryan get to where he is today as he looks forward to the future and where he hopes it will take him.
Creating dialogue and understanding
In the future, Ryan looks forward to running for office and bringing a unique perspective to those so desperately in need of a voice in healthcare at the capitol.
“Sometimes I think it’s hard for legislators to imagine what children who are so complex have the potential to grown up to become,” said Ryan. “They might not realize how important it is for the mother and father to be next to their child, just providing love. That love is some of the most powerful medication, in my mind.”
With someone like Ryan fighting for the care of children with medical complexities in the legislature, our families can be assured their needs and concerns are being heard by Representatives and Senators in the state of Minnesota.
Originally published: May 31, 2016