Meet Miles!

Going to college unmedicated is what Miles’ mom Alyson is hoping for, and his care provider, Janalee Taylor from Cincinnati Children’s, is hopeful this is possible, too. Miles is 16 and was diagnosed three years ago with polyarticular JIA, with Reynaud’s Syndrome becoming a secondary diagnosis. 

Miles had begun complaining of his hands being white and cold, so he and his mother chose to visit a rheumatologist. The school year went by with lots of testing before a diagnosis was made. His symptoms were most severe in his hands, so they Methotrexate and Miles remained on it for one year. When Methotrexate did not work, they tried Humira and Embrel as well. Finally, they considered beginning infusions, but found a clinical trial which ended up “working miracles”.

Eventually, Miles ended up with COVID-19, which was followed by a flare and his first knee injection Miles journey has been a challenge, but he remains positive and can often be heard saying, “This could be much worse; I’m lucky.”

In hindsight, Alyson says there were probably signs that the pediatrician did not pick up on, but from the moment they received the diagnosis from Janalee Taylor, they have been amazed by the care plan and the relationship they’ve be able to develop. 

“Janalee held out the Helping Hands handbook and decision-making cards at our appointments and went through everything,” Alyson says. “I was amazed as a parent. It was so easy to follow”. 

Alyson was always very vocal with Janalee about her desire to get more involved, and when the opportunity to join the PR-COIN Parent Working Group came along, she stepped up. 

Visit our Get Involved page to learn more about how you can get involved in PR-COIN.