"Hell hath no fury like a mom who is told that her child has a devastating illness in which there is currently no cure."
And Heather Patterson would know.
In November of 2015, her 4-year-old daughter fell ill while the family was moving into their new home. For weeks, the usually “spunky, super-sassy, boss of the house” had been noticeably ill-tempered, tired and disagreeable. She was eating more but losing weight, had an unquenchable thirst and for the first time ever started to wet the bed at night.
These symptoms – once attributed to their busy schedule and the stress of the family move – plus the history of diabetes on her husband’s side of the family started to add up for Patterson as she rushed Finley Kate to the doctor.
“The day that Finely Kate was diagnosed with Type 1 diabetes will forever be ingrained in my memory. My husband was home with our two older sons and I was alone with Finley Kate,” she says.
“The doctor on call that day sat down beside me and I remember his words as clear as day, ‘The good news is that we have insulin, administered via needle multiple times a day for the rest of her life that we can give her to keep her alive. The bad news is that too much insulin will be detrimental and not enough will reap the same type of result. Finally, there is, currently, no cure.’”
Fifty Years of Fury
Founded in 1970, the Juvenile Diabetes Research Foundation is celebrating its 50th anniversary all because two moms, full of fury, sat at a kitchen table and decided to do something about a disease that was affecting their children. Their desire for a cure started what would become the world’s leading T1D research organization.
According to JDRF, T1D is an autoimmune disease that strikes both children and adults suddenly and has nothing to do with diet or lifestyle. There is no way to prevent it and there is no cure.
With T1D, the pancreas stops producing insulin, a hormone the body needs to get energy from food. This process that your body should do naturally and automatically becomes something that requires daily attention and manual intervention. Constant blood sugar monitoring, injections or infusions of insulin through a pump and a careful balance of insulin doses, eating and activity become imperative – both day and night – in order to stay alive.
Insulin is only a Band-Aid for this disease. Even with the most vigilant disease management, a significant portion of the day is spent with either high or low blood sugar levels and these fluctuations place people at risk for potentially life-threatening hypoglycemic and hyperglycemic episodes, as well as long-term complications such as kidney failure, heart attack, stroke, blindness and amputation.
“Since two moms founded JDRF seeking a better tomorrow for their families, we have played a leadership role in every major advance, improvement and breakthrough delivered for the T1D community,” JDRF Arkansas chapter executive director Sue Tull explains. “In 50 years, JDRF has made significant progress in understanding, fighting and treating T1D.”
In the beginning, insulins were derived from animals, but today synthetic insulins offer precision and flexibility to better balance blood sugar levels. Early prototype insulin pumps were so large, they had to be worn like a backpack. Now smarter compact pumps fit easily in a pocket.
Even just 30 years ago, there was no way to predict if someone would develop T1D, but today, it is possible to detect before symptoms even arise.
Funding at JDRF is focused on accelerating research in two key areas: curing T1D and improving lives. “Because we are part of the T1D community, we understand the struggles and stresses that come with this disease. That’s why we fight every day to advance research and technology that can reduce the burden of living with T1D and keep people as healthy as possible until we find cures for the disease,” Tull says.
JDRF also works with Congress, federal agencies like the Food and Drug Administration, pharmaceutical and device manufacturers, insurance companies and organizations to secure critical funding, drive innovation forward and advocate for coverage, affordability and choice.
“Our work is strengthened and bolstered by a robust grassroots volunteer network and hundreds of thousands of advocates who support and amplify our calls to action,” Tull says.
A Stable Resource
JDRF believes in order to cure the disease and to keep the community healthy until that day comes, support, engagement and connection are necessary.
Navigating this new, unpredictable world of the COVID-19 pandemic has also been an opportunity for JDRF to reach out and help keep its community safe. People with diabetes are said to be at higher risk of complications due to the novel virus and finding accurate information on how to stay safe can be difficult.
“JDRF continues to keep patients and families connected at this very uncertain time. The organization has such a broad spectrum of engagement, they are able to share vital information that needs to be communicated very quickly,” endocrinologist and board member Dr. Theresa Nimmo says.
“The reputation of JDRF to be an accurate resource is taken very seriously and their timely distribution of information may be what patients and families rely on when it comes to managing diabetes beyond the usual day-to-day activities. They are able to be a stable resource that keeps up with the changes around them, always giving hope.”
According to Nimmo, the biggest impact of COVID-19 for a person with T1D is accessibility. Even on a good day, patients and families with T1D worry about coverage for insulin and supplies. For many, their first impulse is not to stock up on toilet paper and pantry staples, but to see if they will have enough insulin or supplies to last during an extended quarantine.
“My concern as a physician with these patients is their blood sugars and how they will be managed in the event of a hospitalization. Due to the need for Personal Protective Equipment (PPE) and the need to reduce repeated exposure of health care workers, a diabetic needing multiple fingersticks daily – hourly on an insulin drip – brings another potential risk of exposure and transmission,” Nimmo says.
“Not a Day Goes By”
“Second to our hope in the Lord above,” Patterson says, “JDRF, as the leading global nonprofit organization funding T1D research, is a hope for a cure. Not only does the work of JDRF mean a better life for our daughter, Finley Kate, who battles T1D on a minute-to-minute basis, but JDRF plays an integral part in the difference between life and death.”
Patterson became involved with JDRF in January of 2016, shortly after her daughter was diagnosed. “In all honesty, there isn’t a single aspect of our life that juvenile diabetes hasn’t impacted,” she says.
Children with T1D miss more school than their peers. Currently, at the age of 8, Finley Kate hasn’t had the same opportunities of sleepovers and multiple playdates as her friends have, something that her mom says is “extremely difficult on her, on all of us, emotionally.” The disease affects her ability to participate in sports and function at her full potential. “Not a day goes by that she doesn’t ask if the doctors have found a cure.”
“As a parent, from the very second you hear the diagnosis for the first time, absolutely everything changes,” Patterson says. “Our eyes, as a family, have been opened to a world of others around us who are in need of the same comfort that we once longed to find.”
She used this newfound awareness to launch The F Affect, a blog for parents and caretakers of chronically-ill children, and the Facebook group “AutoImmune Moms of Faith.” Their family also owns an apartment complex in Searcy that donates a portion of proceeds to JDRF.
“My hope is that our story, our transparency, will become part of someone else’s survival guide and give them a sense of community,” Patterson says.
Education on the warning signs of T1D is crucial as well, as misdiagnosis of T1D is a frequent, unfortunate and often fatal reality. Patterson often hears misconceptions about the disease, including that it’s caused by the foods you eat or that only kids are diagnosed.
“My daughter was diagnosed shortly after turning 4. However, my father-in-law was diagnosed at the age of 50. And though it is likely that Finley Kate’s case is genetic, we are seeing a global increase in T1D cases with many having no genetic history. This has led scientists and doctors to believe that there are also environmental factors behind the disease.”
She adds that autoimmune diseases such as T1D are the eighth leading cause of death among women, shortening the average patient’s lifespan by 15 years, if not more.
“And while we are fortunate to have access to insulin – the only way for Finley Kate to sustain life – the financial burden of this disease can be upwards of an additional $2,000 per month, causing many families and individuals to ration their supplies and, therefore, put their lives at risk.”
Funding the Next 50 Years
In August, JDRF will host its annual Golf Classic with the Pattersons at the helm, this year expanding festivities to the whole weekend with the inaugural The One Party and a women’s only tennis tournament, The One Match. Funds raised at these events will be used to further the mission to cure, treat and prevent T1D and to fund local programs for family support.
“[The Pattersons] speak up and out for everyone in the T1D community, helping to educate, empower and change the future,” Tull says. “Finley Kate will live a longer and healthier life because of the impact her parents are making on our mission.”
Using funds raised by events like these, JDRF has become a powerhouse in the scientific community with dozens of U.S. locations and six international affiliates. According to JDRF, they have funded more than $2 billion in research to date and have made significant progress in understanding and fighting the disease.
For Patterson, it's simple.
“They are a champion for my child’s life and that means the world.”
JDRF The One Party, The One Match & Golf Classic
Aug. 22 -24
Pleasant Valley Country Club