One day at a time
Team Jellybean: Besties unite for million dollar walk to fight an unexplainable disease
While some girls prattle on about the cutest boy in class, the in vogue fashion trends or the latest One Direction mega hit, two 10-year-old besties quip about how low or high their "numbers" have reached.
And it seems perfectly normal to them, to joke about their blood sugar levels. But for their parents, who socialize in the company of beeping monitors as watchdogs over their children's health, it's as though Type I diabetes is another member of the family, however high maintenance, that takes precedence over anything else — homework, activities, day trips, celebrations, parties.
Abigail Goldenberg, who turns 11 years old this week, was diagnosed on Oct. 25, 2013.
"The biggest change in Abigail's life since the diagnosis is that every single day she walks a tight rope."
Her parents, Liz and Marc Goldenberg, began to notice a radical change in her behavior that led up to an emergency hospital stay in the intensive care unit. Abigail was already suffering from diabetic ketoacidosis, a life-threatening complication that results from a dearth of the insulin hormone.
Abigail, an otherwise goofy, funny and low-maintenance kid with a beaming smile that could engender any adult to give her anything she wants, was having temper tantrums and stomach cramps. She would scream for no apparent reason. Despite a healthy appetite, Abigail had lost a significant amount of weight, her bones protruding prominently from her spine. She complained about headaches. She didn't want to go to school.
These symptoms, which manifest themselves differently in every patient, could have been attributed to start of school jitters or to the typical antics of a growing tween who's testing limits.
At first, doctors suggested that gastroesophageal reflux disease may be the culprit. Perhaps a visit to a psychologist might be in order if tests were inconclusive? But after discovering that Abigail would often visit the bathroom during the night, her parents, who had a similar scare with Abigail's sibling that turned out to be false, clued in to the possibility that there may be something wrong with insulin production.
"The biggest change in Abigail's life since the diagnosis is that every single day she walks a tight rope," Liz says. "If her blood sugar drops too low, which can happen in a matter of minutes, she's at risk of unconsciousness or death. If it goes too high, it's long term damage to her organs.
"Every single day depending on exercise, mood, what food she eats, what food she chooses not to eat and the amount insulin we give her, it all goes into a formula that we have to balance every day — and every day is different."
Families unite
Luckily for the Goldenbergs, Shelley Spector, who also has Type I diabetes, and husband Matt Spector live within a stone's throw on the same street in Bellaire. Their 10-year-old daughter, Lindsey Spector, was diagnosed when she was 5. Shelley had become a community support leader — she organized the first Girl Scout troupe for children with diabetes — whose experience offered a lifeline as the family adjusted to a condition that, to this day, has no explanations. As Abigail and Lindsey attended different schools, the girls didn't know each other — yet.
"It's a grueling disease that doesn't take a break or any vacation," Shelley says. "I would love a moment when there's no diabetes in our lives. If I could take her diabetes away, I would live with double diabetes myself — it's such a burden."
"It's a grueling disease that doesn't take a break or any vacation."
Both girls wear a continuous glucose monitor, a device that measures blood sugar levels every five minutes. Because the reading isn't as accurate as an actual blood test, Abigail and Lindsay have to use finger-sticks that prick the skin to test blood samples for safety. Sleepless nights are part of life, their parents getting up often as technology warns them of sugar spikes and dips. Sometimes the girls are fed while they're sound asleep.
"We use jelly beans nearly every day to help with dangerously low blood sugars," Liz adds. "They keep her safe and she carries them everywhere."
That's why the families, united in the trials and tribulations of managing their daughters' health, formed Team Jellybean in order to raise awareness and funds on behalf of the JDRF One Walk at NRG Park Saturday. Alongside 396 teams and 15,000 people, the 5K walk raised more than $1 million.
"The walk validates for her that she is not alone," Shelley says. "Lindsey realizes that all these people are there for the same cause and goal. Of course my ultimate wish is for a cure. But for now, my wish for her is to have a great quality of life despite living with this disease. We try to keep everything positive and appreciate how lucky we are to have the technology available to us now. It can only get better."
Team Jellybean, the grand marshal group courtesy of a donation by Julie and Dr. Michael Kaplan, raised more than $12,000 for the JDRF Foundation thanks to more than 100 contributors and more than 50 walkers.
"When we decided to do the walk, Charlotte (Abigail's middle sibling) wanted to run the team as her Bat Mitzvah project," Liz says. "Charlotte named us Team Jellybean."
A fitting name for a colorful group of people who turned what could otherwise be an isolating condition into lifelong friendships.