Patrick May was just three weeks removed from major surgery when he stood with his mother at the starting line of the 2015 UPMC Health Plan/UPMC Sports Medicine Pittsburgh Marathon 5K. They were planning to walk, and Patrick’s ability to do even that was cause for celebration. The month prior, the seventh grader had two and a half feet of small intestine removed as part of his ongoing battle against Crohn’s Disease. As race time neared, however, Patrick’s competitive fire started to burn.
“Thirty seconds before the start he said, ‘Mom, I want to run. I can’t walk,’” Mary Amrhein- May said. “I said, ‘Oh, OK, we’ll see how this goes. He just did it. He didn’t even get tired. I was so proud of him.”
In 2016, both Patrick and Mary ran again in the 5K together as part of the DICK’S Sporting Pittsburgh Marathon Run for a Reason charity program as they raised money for the Crohn’s and Colitis Foundation of America (CCFA). Along with Patrick’s father and brother, the whole family has been active as volunteers, fundraisers and advocates for CCFA since the year after Patrick was first diagnosed.
The diagnosis, which came just days after Patrick’s seventh birthday, was difficult to hear but also provided some relief, Mary said. Patrick had been sick for some time but his symptoms were somewhat vague and would come and go. When his weight and growth began to suffer, however, Patrick’s pediatrician sent him to a specialist at Children’s Hospital who quickly reached the conclusion that Patrick was suffering from Crohn’s Disease, a chronic inflammatory condition of the gastrointestinal tract.
Different drug therapies over the next several years yielded some relief and positive results, and in the meantime the family became involved with CCFA. It started as a way to learn about programs and services that might help Patrick, but they quickly found a supportive community of people with whom to share experiences and concerns.
Running became part of the equation when they got involved with CCFA’s Team Challenge program, which offers support and training for destination races in return for fundraising. As the family began to look for experiences closer to home, they learned that they could raise funds for CCFA as part of the DICK’S Sporting Goods Pittsburgh Marathon’s Run for a Reason program. Mary and Patrick signed up to run the 5K together in 2015, and Mary would then run the half-marathon the following day.
Crohn’s Disease had other plans, however, and Patrick suddenly found himself in an emergency health situation because of strictures on his small intestine. Surgery couldn’t wait. He was in the hospital for 10 days and, after eight days without eating was just 58 pounds when he was discharged on April 10, 2015.
He recovered quickly, and mother and son decided to walk, rather than run, the 5K together on race day. That turned out to be easier said than done for Patrick, who runs on his middle school team.
“I saw a whole bunch of other kids getting ready to run and I was sort of feeling like I wasn’t going to let my pride take a hit,” Patrick said. “I decided I wanted to run.”
Fundraising remains an important part of the family’s life. In January 2016, Mary was one of the recipients of the Power to Inspire Awards sponsored by Mizuno and hosted by Fleet Feet Sports. Patrick was the guest speaker for the Women of Distinction Luncheon in 2013 and 2015, served as an honoree for the PA/WV chapter of Team Challenge from 2011 through 2013 and was an honoree for the National Team in 2014. He and his brother Will also received the 2013 Youth in Philanthropy Award sponsored by the Association of Fundraising Professionals for their work with CCFA.
“It’s to find a cure, and not only for me but for a whole bunch of people all over the world battling Crohn’s or colitis,” Patrick said of his fundraising efforts. “We all want a cure because we’re all kind of muddling through, some better than others. But we all still want a cure.”
Mary Amrhein-May and Patrick May’s top tips for fundraising:
- The whole family works together, including Mary’s husband, Charles, and older son, Will. Their extended family and friends are also very generous and many donate every year.
- Patrick has given a number of speeches to help CCFA raise funds.
- The Mays use social media to advertise their fundraising. They both periodically post their fundraising pages on Facebook and always include a brief personal statement, such as a positive comment about the latest research from CCFA, a personal story of hope, a meaningful photograph, a silly or funny comment or a challenge about competing with each other in their fundraising efforts.
- Over the years they have also made things to raise money, including Christmas ornaments, t-shirts, cookies, key chains, candy bars and CDs (both Mary and Charles are professional musicians).
- Patrick hosted a fundraiser at Chipotle last year in addition to his speeches and personal correspondence. Will organizes an annual fundraiser for CCFA at Bruster’s in Bethel Park on Mother’s Day. Mary and Charles have performed benefit concerts and have a few annual performances dedicated to fundraising efforts. For the past several years they have performed at the Spring House in Eighty-Four on Palm Sunday, and donate their professional fees as well as any money collected at the event to CCFA.
- Finally, they feel it is very important to thank everyone who supports their efforts, and take the time to write personal thank-you notes to family and friends.