BY Jason Emerson
When Cazenovia Middle School student Amie Harper was 10 years old, she diagnosed herself with type 1 diabetes — a disease with no known cure and one that, without insulin, is 100 percent fatal. Her parents reacted quickly and a doctor confirmed Harper’s diagnosis, and the 10-year-old has been living with the disease for the past 16 months.
Harper, now 11, wants to help cure this disease, and on Sept. 29 is participating in the JDRF 21st Annual One Walk to raise research funds for a cure for type 1 diabetes — and she is looking for support from the Cazenovia community.
Harper is asking people to join her walk team, the Unicorn Rainbow Fluffballs, to volunteer at the event and/or to donate money to the cause of type 1 diabetes research.
“I hope people try to participate in helping cure this disease — that’s the biggest thing — any way they can help is great,” Harper said. “My goal is to cure it.”
Harper was diagnosed with type 1 diabetes on Mother’s Day 2017. “Her blood sugar was 550, a normal non-diabetic blood sugar is around 85. Her symptoms were drinking and eating a lot, using the restroom frequently, fruity smelling breath and extreme exhaustion. She was getting taller but losing weight. These are symptoms that are hard to spot and confusing, leading to mid-diagnosis frequently,” said Amie’s mother Dara Harper. “Our doctor wasn’t even going to do a simple in-office blood check until we pressed him.”
Type 1 diabetes (T1D) is an autoimmune disease in which insulin-producing beta cells in the pancreas are mistakenly destroyed by the body’s immune system. T1D seems to have a genetic component and can be diagnosed early in life but also in adulthood. Its causes are not fully known, and there is currently no cure. Without insulin, T1D is 100 percent fatal.
According to information from the JDRF, the leading global organization funding type 1 diabetes research,” living with T1D is a constant balancing act. People with T1D must regularly monitor their blood-sugar level, inject or continually infuse insulin through a pump and carefully balance their insulin doses with eating and daily activities throughout the day and night just to survive. While people with T1D rely on insulin therapy to control their blood sugar, insulin is not a cure nor does it prevent the possibility of the disease’s serious side effects.
Even with intensive disease management, a significant portion of their day and night is still spent with high or low blood-sugar levels, placing people with T1D at risk for devastating complications such as heart attack, stroke, blindness, kidney disease and amputation. In addition, an incorrect dose of insulin at any time can be dangerous, even deadly.
“There’s this constant striving for balance,” said Dara, saying that Amie is constantly buzzed by her blood monitor, texted reminders by her parents, poked and prodded at daily, and constantly vigilant about her diet and overall health. “It’s not something you ever understand, you just learn to understand that you don’t understand,” Dara said.
“I really miss bread,” Amie said. “That’s the number one thing I’ll do when I’m cured: eat bread.”
While Amie can physically eat bread, she and her family have made the choice for her to have a low-carb diet because a high amount of carbs can affect her negatively, Dara said. High carbs can lead to high blood sugar which can lead to organ failure, blindness and other effects, she said.
Amie said that while T1D is “not the best thing ever, surely, but it’s also not the worst.” She said one thing she has learned is that most people — sometimes even those who suffer from T1D — don’t really understand the disease. This is one reason she and her family are active members of JDRF. Amie is a youth ambassador for the organization while Dara is a volunteer.
“It’s a great feeling to know you are working towards something, whether it is care, advances in medicine and technology or just finding people who understand is useful,” Dara said.
The Harpers are preparing for the next local JDRF event, the 21st Annual One Walk 5K around Long Branch Park in Liverpool from 9 a.m. to 2 p.m. on Saturday, Sept. 29. The Annual One Walk includes not just the 5K walk but also bounce houses, face painters, food and more.
Amie has started a team and is soliciting donations, participants and volunteers. Numerous members of the Cazenovia community have already joined the Harpers for the event, including a number of member of the Cazenovia Moms Facebook page — some of whom also suffer from T1D — some of Dara’s former yoga students at Cazenovia College and a number of Cazenovia College RA’s who will be cooking food at the walk, Dara said.
Amie’s fundraising goal is $2,500. As of press tie she had raised just over $2,000, although that is mostly from herself and her family, she said.
To join Amie’s team, donate money or just support the cause, go to her participant web page at bit.ly/JDRF-Walk-Amie.
