Casey McNamara, a former Brookline high student and current rising junior at Ursuline Academy, excels as a three-sport varsity athlete.
By looking at her, you would never be able to tell she has Type 1 Diabetes, or T1D.
“On the outside, I look like a normal kid — I do cross country, lacrosse, ice hockey. I ran a half marathon. I’m able to do everything other kids can do, but every second of every day I still have diabetes on top of that. People don’t see what goes on behind the scenes,” she said.
McNamara represented Massachusetts at the 2017 Juvenile Diabetes Research Foundation (JDRF) children’s congress in Washington D.C. from July 24-27. Members of the children’s congress shared their stories with politicians from their state in order to stress the importance of securing money for diabetes research.
The JDRF children’s congress takes place every other year. In 2017, McNamara was selected to participate along with 160 other children with T1D aged 4 to 17 from across America. She had applied two other times at the ages of 12 and 14, but was not accepted until this year, which is the last year she would have been eligible. McNamara said she put an enormous amount of effort into her application this year; she wanted to attend now more than ever.
“I’m glad that this was the year she was chosen, because now she could understand all of it better,” said Karen McNamara, Casey’s mother, who accompanied her to DC.
McNamara and two other children from Massachusetts spoke with Congressman Joe Kennedy, as well as Senators Elizabeth Warren and Ed Markey. She said that they had no trouble convincing these politicians of the need for research, and that they had supported the JDRF in the past.
Some senators and representatives are more difficult to persuade. According to McNamara, politicians from Southern states especially are more likely to think that children bring diabetes onto themselves.
But unlike Type 2 Diabetes, which can be induced by poor diet and lack of exercise, Type 1 is an autoimmune disease. Both types can cause serious complications, including heart disease, eye disease, kidney disease and nerve damage.
“The [Southern] congressperson might say, ‘you did this to yourself — why should we give money to you?’ Or they might listen to the kids’ stories sympathetically, but not end up doing anything,” she said. “It’s hard for those kids, especially the younger ones. But it was easy with Massachusetts.”
Before speaking with the politicians on July 27, McNamara and the other delegates of the children’s congress got the chance to meet each other as well as celebrities and successful adults with T1D. These included professional sports players and an FBI agent.
McNamara’s favorite part of the trip, however, was meeting other kids like her.
“It’s nice to be around people who know what you’re going through. I made instant friends with a girl named Danielle. We talked and laughed for hours and hours—I will never forget that,” she said.
There are some aspects of her life that her friends without T1D would never fully understand.
“I have awesome, supportive friends, but they don’t know the feelings,” she said. “They don’t really get why I have to sit down when I’m feeling ‘low’.”
Before, during and after every game McNamara must check her blood sugar and adjust accordingly. If it is too high, she cannot perform well and needs to take insulin; if it is too low, she cannot play at all, and needs to sit out the game and eat.
But even when she is not playing sports, she must constantly monitor what and when she eats. She must check her blood sugar 12 to 15 times a day, or up to 25 if she is sick.
“I never get a day off. I can’t just eat. I’m not able to,” she said. “If I did, there would be too many repercussions and complications.”
Before applying to be a part of the children’s congress this year, McNamara had attended the Clara Barton Camp for girls with T1D for 10 years, where she met some of her best friends. She and her family had also participated in JDRF fundraising walks because her 6-year-old cousin Cameron was also diagnosed with T1D.
“I have well-managed diabetes. Sometimes my friends don’t realize how serious it can be. If your blood sugar goes too low, you can die — I’ve never been anywhere close to that, luckily,” said McNamara.
Many children at the congress did have serious complications as a result of the disease, and their experiences stuck with both Casey and her mother.
“The children’s congress was so much more than I ever imagined. Learning from other people, getting to listen to their stories was so compelling and touching. It brought me back to when Casey was diagnosed,” said Karen.
McNamara was diagnosed at age 4 after her parents noticed that she was constantly urinating and drinking juice. Her body was attempting to flush out ketones, which are acids that can develop from untreated high blood pressure. She was taken to the hospital and diagnosed with T1D.
But she says she does not really remember that; what she remembers most is her fifth birthday party. She was forbidden from eating her own cake because she had already eaten all her carbs.
“I was distraught. It’s times like those that I wish I didn’t have diabetes for just one day,” said McNamara.
As a result of JDRF’s efforts in the past, there have been many advancements in technology to treat T1D that have made children’s lives easier. The ultimate goal, though, is to find a cure.
“I’m really happy I was chosen to do this. My cousin Cameron deserves a cure. I want a cure for myself so badly, but even more, I want a cure for the people I love and people who have it harder than I do,” said McNamara.