Imagine being diagnosed at just 4 years old with a disease which is fatal if left untreated. Imagine then discovering you’re allergic to the only medicine which can keep you alive.
That’s been reality for as much of Emmy Reeves’ life as she can remember. The 12-year-old has type 1 diabetes, and suffers from a rare allergy to insulin. The drug still keeps her alive, but her reaction to it makes a normal life impossible. She takes antihistamines to prevent painful hives caused by the insulin allergy, but the antihistamines have led to dermatographism, a condition which leaves her skin incredibly sensitive.
“Even light touches hurt her,” her mother, Tiffanie Reeves, said. “She’s in pain. All the time. A hug puts her to a 5 [on a pain scale of 1 to 10], and that’s why she flinches from it.”
Emmy’s body completely rejects long-acting insulin, and her description of the feeling caused by the short-acting type is heartbreaking. “Well, it’s a deep burning…that turns into a fire that sort of spreads through my whole body.”
Tiffanie and Jack Reeves tried everything to help their daughter, consulting doctors all over the country. Finally, in January, desperate for answers, Tiffanie shared their story on a website called Insulin Nation. Soon after, a call came from Dr. Raja Kandaswamy, a surgeon based in Minneapolis and one of the world’s leading experts in pancreas transplants. He told the Reeves he believed Emmy’s situation would only get worse, with her body eventually rejecting the insulin altogether, and he offered advice.
“He said if you’re waiting for her to stop tolerating insulin to do a transplant, she won’t get one in time,” Tiffanie recalled. She and Emmy were soon on the way to Minneapolis, where a team of doctors evaluated Emmy and unanimously agreed with Kandaswamy that a transplant was Emmy’s best chance. The decision was not made lightly. Pancreas transplants are very risky even in adults, and so risky for a child that they are very rarely even considered. The last one performed at the University of Minnesota Masonic Children’s Hospital was in 1998.
“This is the only way we can go forward to try to give her a normal life and to make sure she can be there later in life,” Tiffanie said. A transplanted pancreas lasts an average of just eight years, but the Reeves hope a successful transplant can give Emmy those years, and that in that time a cure for type one can be found. “This is to get her so she’ll be here in eight years, because the way she’s going right now…” The mother’s voice trailed off, unable to put the rest into words.
Emmy will be on the active list for a donated pancreas beginning July 18. The good news for her is that because of her age and the rarity of juvenile transplants, doctors expect her chance to come before the end of the year. The bad news is the cost. The Reeves must be ready to rush Emmy to Minneapolis, needing to be there six hours after the call comes. They will have to stay in Minnesota for up to 120 days, and insurance comes nowhere near covering the full cost of the surgery.
“The estimate of what we need to come up with is $65,000 to $75,000 is what they told us,” Tiffanie said. The Reeves are getting help in raising the money from the Children’s Organ Transplant Association (COTA), but will need help from their community to save their daughter. Donations are tax deductible and those interested can give online.
For most children fighting a disease like type one diabetes, the dream is a cure. For Emmy, things are different. “Her wish in life is just to be a normal diabetic,” Tiffanie said. “That’s our goal, to give us that time so we can have other options for her, and so she can be a kid.”