How one boy with diabetes is trying to make the world a better place

By: Nick Mordowanec | Fraser - Clinton Township Chronicle | Published October 22, 2015

 From left, JDRF southeast Michigan Advocacy Chair Lucretia Conley, Congresswoman Brenda Lawrence’s liaison Jasmine Morgan, Robert Perkins and Phyllis Perkins pose following passage of the Special Diabetes Program in May.

From left, JDRF southeast Michigan Advocacy Chair Lucretia Conley, Congresswoman Brenda Lawrence’s liaison Jasmine Morgan, Robert Perkins and Phyllis Perkins pose following passage of the Special Diabetes Program in May.

Photo provided by Phyllis Perkins

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CLINTON TOWNSHIP — It was the week of Thanksgiving 2013 and young Robert Perkins was just like any other boy.


After a doctor’s visit prior to the holiday for a run-of-the-mill sore throat, Perkins’ parents thought nothing of it.


That was until Robert’s family commented on how slim he looked as opposed to the last time they saw him a month before, and when it came time to delight in desserts, Robert simply opted for multiple glasses of water instead.


That was when it hit Robert’s parents: This wasn’t the average cold. Something was seriously wrong with their child.


They found a glucose meter stashed inside their home and administered a test on their son, which resulted in a “HIGH” reading. The next morning, another test confirmed a 248 blood glucose fasting reading.


A trip to the emergency room at Beaumont Children’s Hospital in Royal Oak confirmed the family’s fears: Robert had Type 1 diabetes.


“A lot of the symptoms for Type 1 diabetes will mimic the flu,” said Phyllis Perkins, Robert’s mother, who along with her husband has Type 2 diabetes. “Earlier in the week, he had a sore throat, so we took him to the doctor. When your kid’s not feeling well, you tell him to drink water, and he was in the bathroom more (times) than we could count.”


Type 1 diabetes refers to individuals who are insulin dependent because their bodies make little to no insulin. Signs of Type 1 diabetes can include extreme thirst, frequent urination, drowsiness or lethargy, sudden weight loss, heavy or labored breathing and sudden vision changes.


Robert, who lives in Clinton Township, is a sixth-grader at L’Anse Creuse Middle School-Central. His diagnosis led him to be prescribed two different types of insulin.


One kind is known by the name NovoLog, which acts more quickly in the body and was used when he ate a meal — especially to cover the specific number of carbohydrates. The other is Lantus, which he took at night and which lasts 24 hours and has a “background” influence that constantly controls blood sugars.


“You’re still trying to figure out if Lantus is keeping sugar high or too low,” Phyllis said. “My husband and I were awake every night at 2 a.m. You can get sleep-deprived for awhile.”


In the beginning of Robert’s diagnosis, Phyllis said, she and her husband were still trying to understand the disease themselves. If the family was going out for a normal outing, like to the cider mill, they would have a checklist that made sure Robert had a source of sugar — like a juice box — as well as a glucose meter.


When the family goes on vacation, the hotel must have a refrigerator to include all necessary food sources.


Robert has had to miss important classwork because of repeated trips to the nurse’s office, and has had to regularly check his meters while running around the soccer field as part of his American Youth Soccer Organization team.


He recalls getting a bad grade on one school test because a headache was so overwhelming he couldn’t think properly.


Robert has had days where his blood sugar level was a dangerous 39, drawing extreme caution from his parents.


“Robert was still alert and talking. A diabetic can have a seizure,” Phyllis said. “It’s all a numbers game, and we try to keep him close to his target number (of 120).”


Even in a difficult situation, Robert has become somewhat of a spokesperson for the diabetes community, mainly through his work with the Juvenile Diabetes Research Foundation, or JDRF — a nonprofit organization that raises funds for research to find a cure.


The JDRF has conducted research in areas that include devices that hold two years’ worth of insulin-producing cells in the body, in the form of a Band-Aid.


Part of the foundation involves interacting with other families who are dealing with similar situations. The JDRF Bag of Hope offers information to help both parents and children deal with a diabetes diagnosis. The program includes Rufus — a bear with diabetes that shows children they are not alone in their situation and shows kids how to administer shots and test blood sugar levels.


“Those days you’re in the hospital, they throw so much at you — how to eat, how to plan,” Phyllis said. “Parents are connected so they don’t feel alone.”


On Sunday, Sept. 27, Robert — along with friends and family — completed his second JDRF One Walk, an annual fundraiser to help fund a cure for Type 1 diabetes. It was held at the GM Tech Center in Warren, and next year will be held on the Detroit Riverwalk.


To date, his team — the Michigan Diabetes Destroyers — has raised nearly $2,000, and 5,000 others raised a total amount of more than $860,000.


Perkins will apply for the JDRF Children’s Congress in 2016, which is similar to a House of Representatives setting in which kids from around the country visit Washington, D.C., meet legislators and discuss the challenges they face in regard to Type 1 diabetes.


He has also had the opportunity to become a Youth Advocacy Leader, which requires children to complete a series of objectives to better inform community leaders and the general public of the perils of the condition. Along with getting dozens of people to sign up for a newsletter, he sent letters to Gov. Rick Snyder and Clinton Township Supervisor Bob Cannon to issue a proclamation declaring November Diabetes Awareness Month.


While Snyder hasn’t yet responded, Cannon’s office did, and Robert spoke about his efforts at the Oct. 5 Board of Trustees meeting.


Clerk Kim Meltzer read a letter describing Robert’s condition, along with his ambitions. The board praised him for his efforts and how he has combated his own condition and has worked to alleviate the pain felt by many others.


Phyllis joked that Meltzer said everything Robert planned to say, and nervousness overcame him. Robert admitted to being a little apprehensive himself, speaking in front of the board and the community.


Progress continues to be made for the family and for others who share Robert’s diagnosis.


“As a mom, I remember what it was like feeling no one understood,” Phyllis said. “If we can let just one other mom and dad know and that there are people who can get it, then that is worth it.”


Robert is not resting on his laurels, either, and his mission is only beginning.


“It feels good to help more people through the JDRF and all the things we can do,” Robert said. “I just hope that one day I can say I was a diabetic.”


For more information, visit the JDRF website at www.jdrf.org. Phyllis has established a coffee house support group for parents with children who have diabetes, and they can visit the Facebook page by searching “JDRF Coffeehouse Support Group Macomb County/NE Wayne County.”

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