Twelve-year-old Emmy Reeves has type-1 diabetes, a disease where the pancreas produces little or no insulin.
Normally, insulin shots would be the treatment, but Emmy is allergic to all of them. She has allergies to the preservatives in insulin treatments, which complicate her therapy and cause symptoms from painful inflammation to anaphylaxis.
So doctors feel the only alternative is a new pancreas, but with all the issues of a transplant, that’s not a sure thing. And on top of that, these types of transplants are extremely rare.
Emmy was diagnosed at age 4 with type-1 diabetes. It’s an autoimmune disease, which means her immune system attacks the insulin the body produces and eventually the body doesn’t produce anymore.
“So the only way she can live, is through insulin injections,” said Tiffanie Reeves, Emmy’s mother.
And that is a big problem for the 12-year-old because of the allergy.
“Some of the treatments stop her breathing. The first shot we gave her sent her into respiratory distress. Some caused severe hives, nosebleeds, or her throat to break out,” Reeves said.
None of them seemed to do any good for her, and doctors finally sent her to the University of Minnesota in Minneapolis to get a new pancreas.
“They said the only chance of her survival is for her to get a transplant,” said Karen Falconer of Roseburg, Emmy’s grandmother. “She will be the first pediatric type-1 diabetic pancreas transplant at the hospital since 1998.
Tiffanie Reeves was raised in Roseburg and was a 2001 Roseburg High graduate. She dealt with a life-threatening disease herself, when she was 16 years old. She went through several months of treatment for the cancer, but she has now been cancer-free for 17 years. Tiffanie was actually named the Rosie O’Donnell Super Kid in the year 2000 after her battle with cancer.
Emmy had a lot of things she wanted to do before she went into the hospital, so she and her parents went on a road trip.
“They’re doing a bucket list before the surgery, because they basically told her, this operation is your only hope,” said Falconer.
Emmy attended a diabetic camp in California for three days, spending a week with other kids with diabetes. The family also stopped at all the places she wanted to see on the way across the country.
When they get back to Minnesota, Emmy will be put on the active transplant list, and since there is no wait-list for pediatric pancreas transplants, they feel that she’ll get the new organ quickly. But as with any transplant, there are risks.
“The most immediate risk is for a blood clot right after surgery and the risk of it (the organ) not taking,” Tiffanie Reeves said.
Once she gets through surgery, she’ll stay in ICU for about eight days, and then in the hospital for several weeks to monitor it. When she gets through that part, the biggest risk is the body rejecting the new organ.
Doctors don’t take out the original pancreas; they just attach the new one lower in the abdomen. Because she will still have her original, if she goes into rejection, it wouldn’t shut down completely. But doctors would have to figure out how to get her back on insulin, and that could be tough.
The transplant is not a cure for type-1 diabetes and Emmy will always have the autoimmune disorder, but if the transplant is successful, it will allow her to stop taking insulin so her body can begin to heal.
It’s been progressively getting worse. The first insulins were the worst because they stopped Emmy’s breathing. But reactions to future insulins were minor.
“But as she’s gotten older, her needs for insulin have increased, and the more insulin she requires, the greater her reaction is,” said Reeves. “Sometimes her body reacts so much that she doesn’t absorb the insulin at all, and in those times, she’s at risk of going into a diabetic coma.”
Emmy’s father, Jack, is a disabled veteran. He went to college and got his degree, and then earned a scholarship to attend the University of South Carolina and wants to get his doctorate in public health. So the family is in the process of moving from Roseburg back to the East Coast so he can pursue his educational goals.
“What he wants to do is bring awareness and change to some of the issues of type-1 diabetes, like the cost,” Falconer said.
He also wants to make changes so that polysorbate and meta crystal are not used in the insulin treatments. Those are two of the ingredients that Emmy is allergic to. That will be the topic of his doctorate.
Emmy knows the risks, but she still has plans for the future.
“She wants to be a zoologist and is an incredible artist, and she’s just a really nice, kind person that deserves to have a semi-normal life, and not be in pain. That’s what we’re hoping to be able to give to her,” Tiffanie Reeves said.
“I think the saddest thing is, most type-1s would say we want a cure, but she doesn’t,” Falconer said. “If you ask her what she wants, she says she just wants to be a normal type-1.”
The family is coming to Roseburg on Saturday for a few days to visit with family and friends, and Emmy will get a private tour of Wildlife Safari while they are here. Plus, they’ll have some fundraisers at the same time.
On Monday, Abby’s Pizza in Sutherlin will donate 25 percent of all proceeds between 5 and 7 p.m. to the Children’s Organ Transplant Association, a nonprofit, which will go to transplant-related expenses. Other businesses are in the process of planning fundraisers as well.
COTA does not charge for its services and 100 percent of the funds raised are available for the family. The funds are available for a patient’s lifetime.
The family is anticipating expenses up to $75,000 that they’ll have to come up with.
The Reeves have to be at the hospital in Minneapolis by July 15. They’ll have to stay there for two more months after the transplant is completed.
Donations may be made to COTA in Emmy Reeves’ name, and the money will be used for costs associated with the transplant.