By MARIE NESMITH
At the age of 10, Malakai Keita was thrilled to take the plight of those impacted by Type 1 diabetes to the U.S. Capitol. Serving as one of Georgia’s five delegates, the Hamilton Crossing fifth-grader participated in the Juvenile Diabetes Research Foundation’s 2019 Children’s Congress July 8 to 10.
“I had a mix of emotions when I heard he had been selected as a delegate,” Malakai’s mother, Kaci, said. “I was excited and extremely proud that he had been chosen and was going to be a part of the wonderful experience. It also made his diagnosis even more real and official.
“…I was extremely impressed with my son playing such a big role and attempting to make a difference in the lives of millions who [suffer] with this disease. Being so newly diagnosed and being just 10 years old, he truly impressed me with how he stepped up and conquered his mission.”
Along with Malakai, more than 160 other youth living with Type 1 diabetes served as delegates for the JDRF Children’s Congress in Washington, D.C. The delegates, ranging in age from 4 to 17, represented every state in America and the District of Columbia, as well as Australia, Canada, Israel, the Netherlands and the United Kingdom.
“First and foremost, Children’s Congress is an opportunity for our young future leaders to share their T1D experiences with members of Congress, and to advocate for the issues that are most important to the T1D community, like the renewal of the Special Diabetes Program (SDP),” JDRF Outreach Manager Teresa Acosta said. “They also develop leadership skills, find inspiration from our T1D role models and special guests — like actor Victor Garber, NASCAR driver Ryan Reed, NFL Super Bowl champ Isaiah Stanback, Disney actress Jennifer Stone, ‘American Ninja Warrior’ Christina Martin, among others — and have the chance to network with other advocates from across the country and from our five international affiliates.
“Children’s Congress truly is a once-in-a-lifetime experience that sets the stage for meaningful advocacy engagement for this next generation of leaders.”
Malakai was diagnosed with Type 1 diabetes at age 9 after his “extreme thirst” and frequent urination last July led his mother to test his blood sugar with a store-bought glucose monitor. His reading registered as “high,” which Keita explained meant the number was “too high to read.” His pediatrician recommended she take her son to Children’s Healthcare of Atlanta at Scottish Rite, where he stayed for three days.
“We went from having a fear of needles and blood to having to see it as well as give injections to your child multiple times a day,” Keita said. “We had to learn how to count carbohydrates in food and drinks, and try to grasp how to calculate how much insulin he needs by his insulin-to-carb ratio, which is ever-changing due to his growth, etc. He is currently on pen injections. He has two different types of insulin. One is Humalog, which is the fast-acting type to cover carbs he consumes from food. He uses Basaglar, which is a long-acting insulin that he takes once a day at bedtime.
“We are so thankful that pretty early into his diagnosis, he was able to get his continuous glucose monitor. It is a device called the Dexcom G6 that is a small device that has a wire, which stays just under the skin and is connected to a transmitter, which automatically checks his blood sugar levels every 5 minutes. It can be worn for 10 days before it has to be replaced.”
Since the device can be used with a cellphone, loved ones can monitor Malakai’s blood sugar numbers and an alarm will be triggered — on the phones — if his glucose levels fluctuate too high or too low.
“I had to kind of grow up quickly and be more responsible than most kids my age,” said Malakai, who resides in Cartersville with his parents, Ansumana
and Kaci Keita, and three sisters. “I have to keep up with all of my supplies, keep an eye on my blood sugar and know when and how to treat. I also have to be strong and explain and educate my condition to others who are not familiar with it. “That Type 1 diabetes is an autoimmune disease where the pancreas stops producing insulin, which is a hormone that people need to get energy from food. It is not something that could have been prevented. It did not happen from eating too much sugar and sweets and from being overweight or not being active. There is currently no cure.”
Noting the disease is 24/7, Keita shared Type 1 diabetes impacts “every second” of her son’s life.
“There are no breaks from it,” she said. “It is with us on vacation, at birthday parties and at school. Every minute of the day his blood sugar level is a concern.
“When he is too high, we have to give extra doses of insulin to try and bring it back down to a normal range. If his blood sugar gets too low, it is a more alarming event since the symptoms can come on very quickly. Low blood sugar causes symptoms, such as feeling shaky, confused and disoriented, or even losing consciousness. When he experiences low blood sugar, we have to get some fast-acting carbohydrates, like a juice box or Skittles into his system.”
After being discharged from Scottish Rite, Malakai’s family received JDRF materials, leading Keita to look into the nonprofit for possible offerings or interactions with other T1D youth. Upon learning about the Children’s Congress, Malakai applied to take part in this experience — writing an essay about his diabetes journey — and he received his acceptance letter last fall.
“The purpose of the trip was to ask Congress to renew the SDP — Special Diabetes Program — funding for research and advances in technology. The cost and accessibility of insulin was also discussed as well as why it is critical that Congress protects those with preexisting conditions and affordable health care,” Keita said, adding she and Malakai were able to meet with U.S. Rep. Barry Loudermilk, R-Cassville, and personally ask for his SDP funding support. “… Without the funding of the SDP, which is $150 million per year, finding a cure would be impossible.
“This funding makes advances in technology possible so that those who suffer with this disease can live a semi-normal and less painful life. There are several trials in process of various types working to find a cure. It also helps lessen the financial burden on those with T1D and their families by doing research and trying out new types of insulins and inventing an artificial pancreas.”
Initially “surprised” by his selection to the Children’s Congress, Malakai was delighted to represent Georgia’s residents living with juvenile diabetes.
“I was excited for my first plane ride and going to Washington, D.C., to meet and hang out with other kids who are like me and know what I am going through,” he said. “It is important [for the Special Diabetes Program to be renewed] because we need a cure. It also helps fund new research and technology to help kids, like me, have a more normal and less painful life.
“I am very proud of myself knowing that I was able to be the voice of people who have Type 1 diabetes, like me,” he said, adding among his favorite moments were “getting to hang out with people who understand what I go through every day and meeting with Rep. Barry Loudermilk. Mr. Loudermilk lives in the same town as me. He was very nice to meet with and he even let me sit at his desk.”
Echoing Malakai’s comments, Loudermilk also was moved by their meeting. Along with listening to Malakai share his Type 1 diabetes journey, the Congressman received a touching memento from the 10-year-old.
“Malakai is an inspiring young man who is not letting diabetes get in the way of his life and ambitions,” Loudermilk said. “He is a great advocate for juvenile diabetes, and I was inspired by his story and appreciate the scrapbook he gave me about his life.”
Citing Malakai’s visit with Loudermilk, Acosta underscored the importance of the Children’s Congress.
“We hope these kids were able to leave their members of Congress with a lasting impression of their strength and determination to lead normal lives while managing a disease, which can be relentless,” Acosta said. “We hope these members were inspired to consider their constituents living with this disease when it’s time to vote on issues important to the T1D community, like continued funding of the Special Diabetes Program and institutions, like the NIH and FDA; policy surrounding insulin affordability; and health-care reform. Malakai reported having a really positive meeting with Representative Loudermilk, for example — every interaction counts.”