One Toddler’s Life Changing Diagnosis

NEW YORK—It was 3:30 p.m. on a Friday last April when Angela Clark and her husband, Jim, drove to a MedExpress Urgent Care clinic near their hometown in Bellefonte, Pa. Their blond, bubbly 3-year-old daughter, Raelynn, known for dressing head-to-toe in pink, had been drinking a lot of water and peeing almost uncontrollably.

Photo courtesy of Angela Clark

The doctors tested her for a urinary tract infection, which came back negative. But the results showed that Raelynn had sugar in her urine.

So the Clarks drove quietly to Mount Nittany Medical Center in State College, Pa.

“Raelynn kept asking us for a drink of water in the car,” Angela said. “We had no idea what diagnosis was in front of us.”

Upon arrival at the emergency room, Raelynn had to pee again, so the nurses collected a urine sample.

“Then, the dreaded news came in,” said Angela.

Raelynn’s blood sugar was at 368. Normal blood sugar for a healthy toddler is between 80 and 120. She had trace ketones in her urine, meaning her body was not producing enough insulin, a hormone that helps digest sugar.

Raelynn was diagnosed with type 1 diabetes, like more than 80 people in the United States each day.

“My heart sank,” Angela said. “I cried and kept thinking, what did I do to cause this?”

According to leading diabetes research centers in the country, Angela didn’t do anything to cause her daughter’s diagnosis. The Juvenile Diabetes Research Foundation (JDRF) says that while scientists do not fully understand the causes of type 1, they believe that genetics are involved.

Type 1 diabetes is an autoimmune disease that occurs when a person’s body stops producing insulin or does not produce it correctly. It is the least common form of diabetes. Type 2, on the other hand, accounts for more than 95 percent of diabetes diagnoses. While there is a lot of confusion between the two different types, they are vastly different. Type 2 is typically caused by obesity, lack of exercise and poor dietary choices. But type 1 is not caused by lifestyle choices, according to JDRF.

With Raelynn sleeping in the backseat, Angela and Jim drove to Geisinger Medical Center in Danville, Pa., a hospital located about an hour from home. They were escorted to the second floor of Janet Weis Children’s Hospital, a part of Geisinger.

“This is where the whirlwind begins,” said Angela. “Raelynn was greeted with a doctor and nurses taking her vital signs, drawing blood, tests galore and reiterating the previous day’s events.”

Photo courtesy of Angela Clark

Angela said Raelynn was hooked up to an IV, which she called “Bob.” The toddler was dehydrated and needed extra fluids.

“We do not even remember sleeping,” said Angela. “There were tears and there was so much information to take in.”

The doctors told Angela and Jim they needed to learn how to test her blood sugar and manage her medication.

“We felt very overwhelmed and helpless,” Angela said. “It felt like everyone that entered the room was throwing a different terminology towards us.”

Raelynn stayed in the hospital for a couple of days while her parents learned the ins and outs of her diagnosis.

“With every other illness, we could nurse her back to health,” said Angela. “But this was a life changing diagnosis.”

And they hadn’t even begun to think about the ways it would alter their finances.

Diabetes can put a serious strain on families, costing $116 billion annually in direct medical expenses nationally, according to Joslin Diabetes Center. When Angela saw the price for all of Raelynn’s medicines, she was shocked.

“It was going to cost us $400 a month, if not more,” said Angela. “That’s like a vehicle payment, which is crazy.”

“It was going to cost us $400 a month, if not more,” said Angela. “That’s like a vehicle payment, which is crazy.”

Through her job at Pennsylvania State University, Angela receives Highmark PPO Blue health insurance. But it would not cover the entire cost of Raelynn’s medications.

So the Clarks applied for medical assistance. To cover what her work insurance does not, Angela has an Aetna Better Health insurance card, which in Pennsylvania is part of Medicaid. Medicaid is a state-federal public insurance program for people who qualify based on low-income.

But there are some things Angela’s still paying out of pocket for, like the ketone testing strips.

This past November, Raelynn was put on an insulin pump, which is a more convenient way to manage diabetes than physically administering insulin shots. Through a catheter placed under the skin, a diabetes pump delivers insulin all day long.

But with convenience comes a cost. The pump itself was quoted to Angela at $10,000.

Without the supplemental insurance, Angela said she does not know how she could afford it.

She will never forget the day, almost a year ago, when Raelynn was discharged from the hospital.

“The car ride home was different,” she said. “Our daughter was different. No more carefree days ahead for her – such an innocent little child whose life will be different from this point on.”

But Raelynn still giggles and smiles and dresses head-to-toe in her favorite color. Even her insulin pump is pink.

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