Skye Garfinkel of Gross Schechter Day School in Pepper Pike will step foot on Capitol Hill in Washington, D.C., next week to meet with national lawmakers as part of the Juvenile Diabetes Research Foundation Children’s Congress.
The Twinsburg 6-year-old will not talk to the members of Congress about how she loves glitter and unicorns or how she plays sports with her older brother Dylan, 10, and she will not tell the story of when she put a classmate in a headlock after he teased her. With the help of her father, Gregg Garfinkel, Skye will tell the lawmakers the story of how she was diagnosed with Type 1 diabetes just over one year ago and what it is like to live with the disease.
The foundation known as JDRF is a global organization that funds research for Type 1 through the Special Diabetes Program, which was created by Congress in 1997, that provides $150 million annually to Type 1 research at the National Institutes of Health, according to JDRF’s website. The organization also provides resources, such as educational summits and fundraisers, to families impacted by Type 1. Children’s Congress started in 1999 and is held every two years. Meetings this year with lawmakers are Monday through Wednesday. The event selects more than 160 children with Type 1 between the ages of 4 and 17 from across the United States to serve as delegates to lobby alongside celebrity role models for Congress’ support of the prevention, treatment and hopeful cure of Type 1.
“JDRF’s top legislative priority is the Special Diabetes Program, and it was last renewed two years ago,” Mr. Garfinkel explained. “It’s set to expire – the funding – on Sept. 30 of this year.” He said the Children’s Congress is hoping to get the program renewed this year.
“Ever since we reached out to JDRF for help, for Skye, we have become very involved in that organization,” Stephanie Elk, Skye’s mother, said on why they chose to apply for the Children’s Congress. She said JDRF was one of the first organizations to whom doctors told the family to reach out after Skye’s diagnosis.
Skye was diagnosed with Type 1 on June 16 last year when she was taken to a doctor’s appointment for what her parents thought was a minor infection.
Mr. Garfinkel recounted the appointment when the pediatrician asked to speak with him in a separate room. At that request, he said he knew bad news was coming.
He said the pediatrician informed him of Skye’s Type 1 and that she needed to be taken to Rainbow Babies and Children’s Hospital in Cleveland right away and that she needed to be admitted to regulate her blood sugar levels.
“I broke down,” he said.
Ms. Elk said Skye had to stay in the hospital for four days while doctors helped regulate her blood sugar levels. The parents also learned how to give their daughter insulin shots and finger pricks needed to check her blood. The diagnosis was a surprise since neither parent knew what the daily life of someone with Type 1 diabetes entails, Ms. Elk said.
“Basically, your pancreas stops working,” Ms. Elk explained on the complications with Type 1. “So, it doesn’t produce insulin like it’s supposed to,” making insulin injections necessary.
At the time of her diagnosis, Ms. Elk said Skye’s blood sugar levels were between 200-300 milligrams per deciliter. A normal blood sugar level should be between 70 and 120 milligrams per deciliter, according to JDRF. If one’s blood sugar levels are too high or too low for too long, that person risks falling into a diabetic coma, which could be fatal.
If Skye’s levels are too low, Ms. Elk said her daughter needs to ingest sugar through snacks or juice; if her levels are too high, “water brings her down, exercise brings her down and then an insulin injection will bring her down.”
While securing funding research for the prevention of Type 1 diabetes and a cure is the top priority of the Children’s Congress, Ms. Elk explained a major motivator for getting involved in the Children’s Congress is the costs associated with treatment.
“[Skye’s] insulin is in the hundreds of dollars now,” she said. On top of the insulin, Skye also has a DEXCOM G6, which is a continuous glucose monitor that inserts a wire just under the skin of her arm to read glucose levels that can be displayed on an app that can be followed by multiple devices. Ms. Elk said the sensor could cost up to $1,500 every three months if her insurance did not cover durable medical equipment. Ms. Elk said the snacks and juices she needs to have on hand for when Skye’s levels are too low is a cost people do not generally think about until they are dealing with the disease.
“I estimate that, since her diagnosis, we’ve given probably close to 4,000 injections of insulin and little finger pokes throughout that one year,” Mr. Garfinkel said.
As for snacks, Ms. Elk explained that when Skye’s blood sugar levels are low, she has to consume 15 grams of carbs every 10 minutes until her levels are normal, which is not always a one-and-done situation.
“Gregg and I are lucky with my health insurance,” she said on covering the costs of insulin and the DEXCOM G6. “But not everybody’s that fortunate, you know, there are people that don’t have health insurance.
“It’s expensive to have Type 1 diabetes, and it shouldn’t be,” she said. “It’s just not fair to people. So, Gregg and I, we submitted the application. I was shocked and excited when [JDRF] accepted her.”
After she was chosen, Mr. Garfinkel said Skye needed to make a scrapbook, make a video and hand wrote letters to Ohio Senators Sherrod Brown and Rob Portman and U.S. Rep. David Joyce, R-Bainbridge, for the Children’s Congress to introduce herself and explain what she goes through with having Type 1 diabetes.
“It is my hope that we can work together to find a cure (for diabetes). I really hope you can meet with me when I am in Washington,” Skye concluded in each of her letters.
Even after Washington, Mr. Garfinkel and Ms. Elk said they will continue to advocate for JDRF and participate in the organizations events.
Last fall, Ms. Elk said pitcher Nick Goody of the Cleveland Indians helped Skye promote a shirt that said, “Reach for the Skye” from Fresh Brewed Tees to help raise money for JDRF and that he coined the phrase, “Skye’s got this!” She said they will work with Mr. Goody again this year to promote another shirt and participate in the JDRF One Walk to raise money and awareness for JDRF.
“Without their support, we don’t know where we would have turned,” Ms. Elk said of the organization. “We didn’t know what Type 1 was before she was diagnosed. They helped us.”