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

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.

But that email set in motion a chain of events, resulting in the nation’s sole pancreas transplant of a child this young in nearly 25 years. It also led to his daughter being cured of her diabetes.

“It’s amazing. She’s a totally different child,” her mother said. “Every day that she does not reject this organ, I’m going to hug her, even though she may get tired of Mommy hugging her.”

‘You couldn’t touch her skin without her recoiling’

Kandaswamy, the director of the pancreas transplant program at University of Minnesota Health, remembers receiving the email from Emmy’s father “like it was yesterday.”

Kandaswamy, who has two daughters himself, felt the pain of a father who desperately wanted help for his child. But there was little medical literature to guide or support a pancreatic transplant in a child. There have been other cases in which children receive a new pancreas, but those transplants are usually done in conjunction with kidney and intestine transplants.

Only nine children have received a sole pancreas transplant, Kandaswamy said. The last time a pancreas transplant was done in a child this young, he said, was nearly 25 years ago. That transplant was performed at the University of Minnesota in 1994 on an 11-year-old boy by Kandaswamy’s mentor, Dr. David Sutherland, who is considered the father of pancreatic transplants. Unfortunately, that pancreas only lasted six months in the boy.

“Pancreas transplants are generally just not done on children,” Kandaswamy said.

But his mentor taught him to always put a loved one in that patient’s place and ask yourself, ” ‘What would you do if it was your mother or your daughter who needed the care?’ Ask that question, and you will get your answer.”

Kandaswamy said that’s exactly what he did when Emmy first visited. “I have two daughters of my own. One of them is very close in age to Emmy,” he said. “Looking at her, you could see: ‘Hey, if this was your daughter, what would you do?’

“You couldn’t touch her skin without her recoiling,” said Kandaswamy, who is also a professor in the department of surgery at the university’s medical school. “Her quality of life was just deteriorating to the point that this was a cycle that would not be compatible for long-term survival.”

He had to educate others in the hospital about why he felt the transplant would work for a child. The university had a new pediatric hospital, and if the surgery didn’t go as planned, the institution’s reputation could be adversely impacted.

“There was a huge amount of apprehension,” Kandaswamy said. “I knew we were taking a big risk in that this may not go well.”

A team of more than a dozen doctors was put together to study Emmy’s case: surgeons, anesthesiologists, nephrologists, allergists, transplant coordinators, pain management specialists and others.

After a four-day assessment in April 2017 at the University of Minnesota Masonic Children’s Hospital, they agreed that a full pancreas transplant was the best option of giving her a better quality of life.

“We didn’t make the decision without due thought and process,” Kandaswamy said. “We had to do it because of the extenuating circumstances here.”

Kandaswamy felt that in the nearly 25 years since that first pancreas transplant on a child, the surgical techniques and post-transplant management have advanced to the point that his team could “successfully perform a transplant in a child this young.”

A healthy pancreas would allow her body to naturally produce insulin – effectively curing her diabetes – but the surgery carried many risks, incl