Volunteering helps Amy Maggard make daughter’s life better

Amy Kopf Maggard says she hasn’t had a good night’s sleep in more than 10 years.

She may not be joking.

In the summer of 2007, Maggard noticed that her then 2-year-old daughter, Sofia, was always thirsty.

“She’d want more to drink, and she was lactose intolerant, so she only got water, but she would go sippy cup after sippy cup, and get so upset when they were done, and her poor little belly was so distended with water, and she’s really a happy-go-lucky kid, and she started to get real cranky, and, also losing weight.”

Maggard wonders if she missed signs of the underlying problem.

“We didn’t have a family history. We didn’t know, and in retrospect I look back at pictures around that time and wonder, ‘Were there signs, did I miss something?’

“I noticed she looked not well, so I took her to the pediatrician after the weather broke and her thirst remained, and asked them to test her for diabetes … and they had me do a urine catch on her, and I dropped it off and I wasn’t five minutes from the doctor’s office when they called and said, ‘Take her to the hospital.’ Her blood sugar was over 900.”

Sofia spent nearly a week in Dayton Children’s Hospital, including three days in intensive care, and two days in the regular ward “just getting ready to go home with her and get used to our new normal.”

Thus started Maggard’s journey as a member of the JDRF community, the next step of which is being honored as the Dayton-area Volunteer of the Year at the JDRF One Walk Kings Island on June 2.

“I was shocked,” the Tipp City resident said of her reaction to winning the award. “JDRF is one of those organizations that is just filled with marvelous people who do so much because they all want the same thing, they all want that cure for their kids, so I was shocked and honored and speechless and emotional.”

Maggard’s involvement with JDRF is a way for her to have some measure of control of a situation that often feels helpless.

“You never know which way it’s going to go, what’s going to affect it, what’s going to cause a high, what’s going to cause a low. For me, volunteering, raising money, working toward a cure, is a way for me to feel like I have some control, input, into making life better for her,” she said.

She remembers what spurred her to get involved with JDRF.

“At the time the twins were 2, Zoe was 4 going on 5, a lot of little kids at home, working full-time, and didn’t really know anyone else who had a child like that, so I think we felt a little isolated and didn’t really do a lot of outreach to find things. I think we were just so mired in life at that time.

“Come to find out in my little town of 10,000 people, there are 18 kids in the school district with Type 1, which I think is a pretty significant number. At some parties, I was giving Sofia an injection, and one of the moms said, ‘Hey, my kid has Type 1, so we started taking through them, then I became more involved with JDRF. “

Maggard, 47, and her husband, Dylan, 44, now have four daughters – Sofia and her twin Naomi, both 12; Zoe, 15, and Hadley, 7. Initially, she participated in chapter walks. One year, the family went to a JDRF Christmas party and Sofia expressed an interest in becoming a JDRF youth ambassador. After her daughter was accepted, Maggard was asked to join the Dayton Action Council. She is also a board member, and has been a walk captain, outreach lead and outreach volunteer.

“I’ve been on the gala committee, the Dayton gala committee, and we volunteer regularly at the JDRF Cincinnatian of the Year gala and the Cincinnati walk,” she said.

“Amy has such an important impact on our families in the Dayton area,” JDRF development director Nick Wagner said. “Whether she is speaking with newly diagnosed families at events or connecting with walk teams, she is always positive and willing to help. We are lucky to have Amy in the JDRF family.”

A misunderstanding with one of Sofia’s kindergarten teachers led Maggard to lead Type 1 education and training sessions for teachers.

“When she was in kindergarten, we had an issue with one of the gym teachers. She said she didn’t want to run, and she thought she was being lazy and just didn’t want to run. Well her blood sugar was 50. She was pretty dangerously low. She didn’t get the significance of that,” Maggard said.

“We went and talked to the school about it and they were very good, and we’ve done some education with the school. They had an in-service day that we helped set up, and a member of JDRF came in, a board member who was also a teacher, and did an in-service, and every year I do a training with all of her teachers at the beginning of the school year to bring them up to date on Type 1.”

Maggard marvels at the advancements that have been made since Sofia was diagnosed.

“When she was diagnosed, there were only five human trials going on, or medical trials, today there are over 50, so I can see that progress. The Medtronic artificial pancreas that came out – huge. Dexcom … what I wouldn’t have given for that when she was little, and couldn’t differentiate between high and low, it was just kind of guessing.”

“I think for me that was the hardest part with her, with her was trying to explain forever to a 2-year-old that we’re going to have to do this forever. At that time they didn’t really put the kids on pumps right away, so we were doing injections, and there’s nothing good about having to hold a 2-year-old down and give them shots.

“She doesn’t remember, and in that way I think we feel fortunate. I mean it was awful back then, I also feel like I had to put a part of my mom self away to be able to do that. I mean no parent wants to hold their kid down and give them a shot. But you know that you have to do it if they’re going to live.”

Written by: Richard Maloney, JDRF Volunteer