Medicine for her diabetes kept her alive -- and it was killing her, too

CNN/ Newswire | 6/12/2018, 10:11 a.m.
Emmy Reeves shows off the My Little Pony mural she painted in her sister's room. She points out other displays ...

By Wayne Drash, CNN

(CNN) -- Emmy Reeves shows off the My Little Pony mural she painted in her sister's room.

She points out other displays of her work around the family home: a portrait of a cat, a painting of a hillside overlooking Lake Superior, a small sculpture of her riding a wolf.

At 13, Emmy has undergone an awakening.

Just months ago, she struggled with the rarest of conditions: She was a child with Type 1 diabetes who was allergic to the insulin shots she needed to stay alive.

She was given an array of antihistamines to dampen her allergic reactions as a means of survival. But the result was that she slept about 20 hours a day -- and the possibility of dying from her daily insulin remained.

The very medicine she needed to stay alive was slowly killing her.

"It's horrifying to know that every day, you would give your child a medicine that, in essence, could kill them," mother Tiffanie Reeves said. "It's just really scary."

For Emmy, every insulin injection felt like fire spreading through her body, from her fingertips to her toes. When her parents tried to hug her, she'd flinch because the pain was unbearable.

The first time she was given an insulin shot, she stopped breathing, fainted and was rushed to the hospital. She was just 4 years old. In the months after, her parents held her down for every insulin shot. She'd scream and shout, "I'll be a good girl!"

"We have to do this because we love you. This is what keeps you alive," her parents would say.

For nine years, she suffered like this. Beyond the pain, she developed cataracts and often broke out into extreme rashes. She was medicated so much, she struggled with memory and an array of other issues.

Her parents tried everything. They took Emmy to top medical institutions and spoke with insulin companies to get the least amount of preservatives in her insulin, because that's what they believed was causing the allergic reactions. Nothing seemed to work.

Desperate, her father wrote an email last year to Dr. Raja Kandaswamy, one of the nation's pre-eminent pancreas transplant surgeons. "Her quality of life is degrading faster than we had hoped, so now we are looking for a solution that will allow her to stop needing insulin, while we find a solution to her allergy," Jack Reeves wrote.

More than 1 million Americans have Type 1 diabetes, an autoimmune condition that destroys the insulin-producing cells in the pancreas. Insulin is a hormone needed to allow sugar to enter cells to produce energy. For most children, the condition is managed through insulin injections and a close monitoring of their blood sugar levels. It is exceedingly rare for a child to have an insulin allergy on the magnitude as Emmy.

Emmy's father wasn't looking for a cure for her diabetes. He was simply hoping to give his daughter an improved quality of life to help manage her diabetes. Her parents feared that she would die within a year if she stayed on the same course of treatment.