Community Corner

Local Boy Uses his 'Something' to Make a Difference

Brett Rubin's type 1 diabetes doesn't slow him down, but it propels him forward to advocate for a cure.

Brett Rubin can't remember a time when he didn't have type 1 diabetes.

That means Brett doesn't know a time when he or his mother, Sandy, weren't constantly counting, adding numbers in their heads to keep his insulin levels where they need to be.

Brett also doesn't understand quitting. The 11-year-old sixth grader doesn't let diabetes get in the way of doing the things he wants to do. And he's making it known by partnering with Congressman Mike Fitzpatrick (R-8th) and the Juvenile Diabetes Research Foundation (JDRF) to work towards a cure for the disease he's known as the norm for the majority of his life.

Find out what's happening in Northamptonwith free, real-time updates from Patch.

Walking for a cure

The JDRF is an organization whose purpose is to find a cure for type 1 diabetes through research. Recently, the JDRF and Council Rock School District partnered to hold a Kids Walk at Bucks County Community College. Much of the proceeds from the walk go straight to the JDRF.

Find out what's happening in Northamptonwith free, real-time updates from Patch.

While this was the first year CRSD partnered with JDRF, the Rubins began participating in the walks shortly after Brett was diagnosed. Fashioning shirts that labeled themselves "Brett's Band," because of his vast interest in music, the team of two, along with close friends and family, marched the walk proudly to show their support for Brett and the many other children with type 1. 

The Rubins have raised more than $35,000 for diabetes research, and Brett has received six Golden Sneaker awards for raising more than $500 each walk.

This year alongside them was Congressman Fitzpatrick, who the Rubins first met through the JDRF's Promise to Remember Me campaign in August. The campaign seeks to connect local representatives with JDRF children in their area.

During the meeting, Fitzpatrick listened to the stories of local families and signed a letter to Dr. Margaret Hamburg, M.D., Food and Drug Administration Commissioner. The letter urged Hamburg to continue research and development for an artificial pancreas to "help improve health outcomes for those with type 1 diabetes." It was signed by both Fitzpatrick and Brett Rubin.

He then came to Northampton to speak at 's JDRF Kids Walk to Cure Diabetes Kick-off Assembly. During the walk, Fitzpatrick never left the Rubins' side, sporting his "Brett's Band" t-shirt along with the rest of the crew.

"The JDRF is our family," Sandy Rubin said. "As the Congressman told me on Sunday, 'Your son has a gift to reach people; you can't buy that; you're born with it and then it's nurtured.' He encouraged me to lead him towards community service and welcomed to help mentor him along the way."

Everybody has something

From the time Brett was diagnosed as a toddler, his mom has taught him to explain his condition in a very simple way: Everybody has something, and your something is diabetes.

Brett repeats these words when people ask about his diabetes. One of his most important messages is his disease has nothing to do with eating too many sweets.

"I always tell people that my pancreas is broken," he said.

People with type 1 have a pancreas that no longer produces its own insulin. Therefore they have to administer it themselves, a job that requires constant attention, monitoring and calculations.

Brett calls it a "rollar coaster" because there is no routine about how he monitors his health. Every day is different and every day he and his mom have to be on top of their game. He also has become "best friends" with his school nurse, Judy Kaufmann, from visiting her three times a day for most of his life.

"I rely on insulin injections ... to deliver the insulin along with 10 to 12 finger prick tests every single day," he said in a speech he gave to Fitzpatrick earlier this year. "Of course, juggle in food, drink, exercise, maybe a cold, or a growth spurt, and this is what I do every single day."

A mother's love

Sandy Rubin wishes she could take her son's diabetes for him. 

"Managing diabetes for a young child is my full time job 24/7; no if's, and's or but's," she said. "I pray I will live until Brett has a cure; then my heart will be free to sing."

When he was diagnosed she began to read on the subject so she could be as informed as possible.

"I can't read enough," she said.

Also, she used to teach Brett that he should be a boy first and a boy with diabetes second. After the meeting with Fitzpatrick and Brett's recent push for advocacy, she decided to change her views.

"First and second are tied for first place," Sandy Rubin said. "They have to be." 

In their house, the role model is the pancreas. They try to emulate what the organ would do for Brett if it worked properly. This involves endless charting, counting and mental endurance.

Although she tries to keep Brett's life as normal as possible, there are simply some regular childhood activities that are too difficult to orchestrate for a boy with type 1. For example, Brett doesn't go to sleepovers because his blood sugar has to be monitored one or two times each night, a job that falls to the parent.

Out-of-the-ordinary field trips and school activities can bring a whole new level of anxiety to the family's "routine," so Sandy said she tries to be present at them as much as possible. 

"When I miss school because of diabetes, my mom misses work," Brett said. "I have learned that diabetes is not only about me; diabetes affects other people without diabetes too."

Though faced with what may seem like dooming circumstances, Brett and Sandy remain optimistic about the future, and there are plenty of things he can do and does very well. 

Brett starting picking up different instruments at a young age, like violin, guitar and trumpet, and he's a whiz on the tennis courts, Sandy said.

"I have a lot of good people keeping me strong," Brett said.

In a speech to his classmates at MMW, Brett said meeting Fitzpatrick was the "best experience of my life." He also left them with a clear, simple message: "Don't let your 'something' bring you down."


Get more local news delivered straight to your inbox. Sign up for free Patch newsletters and alerts.

We’ve removed the ability to reply as we work to make improvements. Learn more here