The medicine keeping her alive was also killing her

She points out some other displays of her work around the family home: a portrait of a cat, a painting of a hillside overlooking Lake Superior, a tiny 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. although the result was which she slept about 20 hours a day — along with also the possibility of dying by her daily insulin remained.

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

“the idea’s horrifying to know which every day, you would likely give your child a medicine which, in essence, could kill them,” mother Tiffanie Reeves said. “the idea’s just actually scary.”

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

initially she was given an insulin shot, she stopped breathing, fainted along with also was rushed to the hospital. She was just 4 years old. within the months after, her parents held her down for every insulin shot. She’d scream along with also shout, “I’ll be a not bad girl!”

“We have to do This kind of because we love you. This kind of is actually what keeps you alive,” her parents would likely say.

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

Her parents tried everything. They took Emmy to top medical institutions along with also spoke with insulin companies to get the least amount of preservatives in her insulin, because which’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 actually degrading faster than we had hoped, so today we are looking for a solution which 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 which destroys the insulin-producing cells within the pancreas. Insulin is actually a hormone needed to allow sugar to enter cells to produce energy. For most children, the condition is actually managed through insulin injections along with also a close monitoring of their blood sugar levels. the idea is actually 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 much better quality of life to help manage her diabetes. Her parents feared which she would likely die within a year if she stayed on the same course of treatment.

Emmy Reeves holds her cat along with also a stuffed pancreas. She recently underwent a pancreas transplant which has transformed her life.

although which email set in motion a chain of events, resulting within the nation’s sole pancreas transplant of a child This kind of young in nearly 25 years. the idea also led to his daughter being cured of her diabetes.

“the idea’s amazing. She’s a totally different child,” her mother said. “Every day which she does not reject This kind of 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 by Emmy’s father “like the idea was yesterday.”

Kandaswamy, who has two daughters himself, felt the pain of a father who desperately wanted help for his child. although there was little medical literature to guide or support a pancreatic transplant in a child. There have been some other cases in which children receive a brand new pancreas, although those transplants are usually done in conjunction with kidney along with also 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 kind of young, he said, was nearly 25 years ago. which 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 actually considered the father of pancreatic transplants. Unfortunately, which pancreas only lasted six months within the boy.

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

Diabetes Fast Facts

although his mentor taught him to always put a loved one in which patient’s place along with also ask yourself, ” ‘What would likely you do if the idea was your mother or your daughter who needed the care?’ Ask which question, along with also you will get your answer.”

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

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

He had to educate others within the hospital about why he felt the transplant would likely work for a child. The university had a brand new pediatric hospital, along with also 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 which This kind of 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 along with also others.

After a four-day assessment in April 2017 at the University of Minnesota Masonic Children’s Hospital, they agreed which 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 along with also process,” Kandaswamy said. “We had to do the idea because of the extenuating circumstances here.”

Kandaswamy felt which within the nearly 25 years since which first pancreas transplant on a child, the surgical techniques along with also post-transplant management have advanced to the point which his team could “successfully perform a transplant in a child This kind of young.”

A healthy pancreas would likely allow her body to naturally produce insulin — effectively curing her diabetes — although the surgery carried many risks, including the possibility her body would likely reject the organ.

“Pediatric patients, they have very active immune systems, along with also they will try to spit out any kind of organ,” Kandaswamy said.

Emmy along with also her mother would likely also need to move to Minnesota by South Carolina to be near the hospital the moment a pancreas became available.

Before she headed north, though, Emmy created a bucket list: eat jambalaya in Louisiana, feast on a steak in Texas, visit the Grand Canyon along with also see her friends by diabetes camp in California, where she once lived.

The family hit the road. Emmy got to do everything on her list.

the idea was, her parents say, a farewell trip, should she not survive.

False alarms along with also the magic moment

Emmy along with also her mother arrived in Minnesota on July 15. They settled into the Ronald McDonald House, where families stay for free during visits at the hospital. They then had to wait for a pancreas to become available.

Three times, the calls came which an organ might be available. Each time turned out to be a false alarm. The second was on Thanksgiving.

At one low point, Emmy suffered a severe allergic reaction in January; she stopped breathing along with also had to be rushed into emergency care. Still, she battled on.

Then came the moment. On the afternoon of February 9, Kandaswamy called Emmy’s mother with news which a pancreas was available. Emmy was watching a documentary about wolves, her favorite animal, with her tutor at a museum.

Mom let her finish watching the film along with also then told her the idea was time. They needed to rush back, gather up some belongings along with also get to the hospital. When they got to the Ronald McDonald House, the place was abuzz. Word had spread like wildfire which Emmy’s moment had arrived. Families along with also staff cheered them on along with also wished them well.

At the hospital, Kandaswamy greeted them within the lobby. He explained which a procurement team had gone to get the organ about an hour away in St. Cloud — which there was still a possibility the idea might not be a proper fit although which he was optimistic.

Emmy's mother, Tiffanie Reeves, clutched Ducky throughout the transplant. The stuffed animal was given to Emmy when she was first diagnosed with type 1 diabetes.

Emmy was prepped for the surgery so she would likely be ready when the pancreas arrived.

About 3 a.m., Kandaswamy conferenced in Jack, who was back in South Carolina with Emmy’s younger sister. “I think we are going to go ahead. The organ looks not bad,” he said.

On Emmy’s 210th day in Minnesota, the transplant began. which number isn’t lost on the family: She was wheeled into the operating room on 2/10.

As Emmy underwent surgery, Mom clutched a tattered yellow stuffed animal named Ducky, who was given to Emmy after she was diagnosed with diabetes.

The surgery took more than four hours. “the idea was a great, great feeling when we got her done,” Kandaswamy said. “although I knew in my mind which the job was only half done. We were excited although also cautiously optimistic at which point.”

The doctors had to make sure the brand new pancreas — what Emmy nicknamed “Player 2” — worked properly, which her body didn’t reject the idea along with also which her body could tolerate the immunosuppressive drugs she needed after the transplant.

She responded well the first week, although within the second week after the transplant, her body began to reject the organ. Her immune system saw the idea as foreign along with also tried to attack the idea.

“I had to come along with also tell her which her body is actually in rejection,” her mother said. “We’re not sure what’s going to happen within the future.”

They decided to try a stronger immunosuppressant. “We’re already down the rabbit hole, Mom. We gotta do what we gotta do,” Emmy said.

Ever since, her pancreas has functioned as hoped.

Dr. Melina Bellin, the pediatric endocrinologist with University of Minnesota Health who worked with Emmy, said the idea was “touch-along with also-go” early on, although everyone was relieved when Emmy’s health turned around.

“the idea’s particularly rewarding when you’re at which point within the beginning when you’re not 100% sure the idea’s going to turn out the way you wanted,” she said. “the idea definitely makes the idea which much better when the idea does.”

Kandaswamy added, “We were able to treat the idea effectively along with also got the idea turned around.”

With the healthy brand new pancreas, he said, her diabetes has been cured. She no longer needs insulin shots or the antihistamines which she was taking to try to limit her allergic reactions. The hospital slowly weaned her off all of those medications which were producing her extremely drowsy along with also “blunting her consciousness,” Kandaswamy said.

“Then we saw the real Emmy. She began actually blossoming,” he said. “the idea’s like a cloud has been lifted off her consciousness so she can actually express all of This kind of stuff in a big way.”

One of the greatest moments of his career, Kandaswamy said, was when Emmy hugged him: “There was nothing more fulfilling than seeing her walk up, give me a hug along with also say, ‘I want to go back home.’ the idea’s the greatest thing I’ve ever heard.”

Pancreas transplants are not recommended for most children with diabetes, although Kandaswamy said he hopes This kind of case will open the way for children with rare conditions like Emmy who could benefit by a pancreas transplant. “I think This kind of will be an index case which will help spark which awareness,” he said.

Speaking up to help others

within the family home in Columbia, South Carolina, Jack along with also Tiffanie Reeves are still in near disbelief at how well Emmy is actually doing. She’s thriving in ways they could only dream of. Beyond her artwork, she’s began playing the piano. She can go on hikes. She can shoot hoops. She can play with her younger sister, Abby.

Emmy Reeves shows off the mural she painted in her sister's room after her transplant.

“She’s getting a childhood, finally. She’s getting to be able to be a kid,” her mother said. “I mean, This kind of child’s achieved so much in just the three months since transplant. the idea’s going to be pretty incredible to get to see what she’ll be able to do within the next few years.”

The family agreed to tell Emmy’s story in hopes which the idea can help some other children suffering as she did. They know of four young children around the entire world that has a similar insulin allergy as she.

“If our experience could help even one kid, I think the idea would likely be worth the idea,” Tiffanie said.

Emmy is actually not out of the woods. The first year after a transplant is actually especially critical. Her body could still reject the organ. The family tries not to dwell on which. “We still live life, along with also we don’t let the worry along with also stress of which keep us along with also our daughters by living the life which we need to,” her father said.

Emmy hopes to be a zoologist one day.

For today, she’s shy around sy88pgw’s camera along with also doesn’t want to talk with cameras rolling. When they’re off, she stands next to a window overlooking her backyard along with also a decaying swing set.

She says she’s drawn sketches of what she envisions back there: a greenhouse, a brand new swing set, a fire pit along with also a fence.

When the Make-A-Wish Foundation reached out, she told them she didn’t want to travel anywhere fancy or meet a famous star. Instead, she shared her vision of a brand new backyard, a place where she can finally be herself.

The medicine keeping her alive was also killing her

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