COTA for Emmy

Our Story

We’re back on a road we never wanted to be on again, but here we are. It’s been 3 years since Avery’s transplant surgery and now it’s Emmy’s turn to undergo a TPIAT surgery to treat her chronic pancreatitis that has taken over her life with ongoing pain and frequent hospitalizations. Emmy was first diagnosed with pancreatitis when she was just 3 years old and has been in and out of the hospital many times since then. With each episode, her disease has slowly progressed into what it is today.

This past year has been especially difficult. Her episodes have brought more pain, more vomiting, longer hospital stays, and daily pain. If you know Emmy, you know she’s a social butterfly full of love and energy and definitely doesn’t like to sit still. It’s been incredibly hard for her to miss out on playing with friends and enjoying her usual activities. Yet, Emmy pushes through it all with a smile. She experiences pain every day while still lighting up every room she enters. Her positivity is inspiring and not even pancreatitis can dim her spirit.

In early March 2026, we were referred to Cincinnati Children’s Hospital to evaluate Emmy for the TPIAT surgery. After 12 appointments, an ERCP, and a short hospital stay for post-ERCP pancreatitis, the TPIAT committee approved her to undergo surgery June 5, 2026.

What is a TPIAT?

Total Pancreatectomy (“TP”) – This involves removing the entire pancreas and a section of the small intestine, then reconstructing the gastrointestinal tract. To prevent post-surgical complications, the appendix and gallbladder are removed and sometimes the spleen if necessary. There is a 50/50 chance they will be able to preserve the blood supply that runs on the backside of the pancreas that feeds the spleen. If they are able to do this without compromising it, they will be able to spare Emmy’s spleen and she will not have all of the risks that go along with removing a spleen (increased infection risk for life, fever protocols, etc). We will not know if they are able to do this until they can see if her pancreas has scarred around her vessels during the surgery.

Islet Auto Transplantation (“IAT”) – After the pancreas has been removed, the “islet isolation team” takes the pancreas to a laboratory where the pancreas tissue is dissolved and the islets are isolated and recovered. The islets have beta cells inside them. The beta cells are responsible for producing insulin. The team returns the islets they harvest from the pancreas and the surgeon transplants them into the liver. Her liver will then start to embed these cells and take on the function that her pancreas once did.

The surgery takes roughly 12 hours to complete. Following the surgery, we are expecting Emmy to be in the Pediatric ICU (PICU) for 1-week post-surgery and then on the diabetes unit for 1-2 weeks. Once discharged, we will stay in Cincinnati until roughly the 8-12 week mark for follow up appointments and care.

Emmy will have a feeding tube in her abdomen for a few months to ensure she is able to get the amount of nutrition she needs to heal up. She will have a continuous glucose monitor and insulin pump for the foreseeable future, as she will be 100% insulin dependent for an unknown length of time. Over the first 6-12 months, we will get a feel for how the transplanted islet cells are performing in her liver, and this will ultimately determine the level of insulin dependency she will have long term.  She will continue to take pancreatic enzymes when she eats to help with food digestion for the rest of her life, which she has become accustomed to over the past year. Emmy will not be able to wear her scoliosis brace while she has the feeding tube in her abdomen (2-3 months) so the quicker we can get that out, the quicker we can get her back to bracing. Good news is we are before her prime growth period so we are hopeful we will not see too much progression in her curve during the time we are without her brace. 

Despite all of this, we are confident that by around the 12-month mark, Emmy will be off pain medications and back to running, jumping, and playing like a typical 11-year-old. She’s ready to reclaim her life, start middle school, and continue shining her light on the world. We’re so grateful for all the love, prayers, and support Emmy has already received. Every thought, every prayer, and every bit of support means the world to her and our family.

The Children’s Organ Transplant Association is a 501 (c)3 nonprofit that has been assisting families with a child in need of a lifesaving transplant since 1986. COTA doesn’t charge a fee or keep a percentage so 100% of all donations made in honor of Emmy are available for her lifetime. Emmy will face life-long medical costs including follow-up procedures, medication, and equipment expenses. Our hope is that all donations made to COTA in honor of Emmy will help Emmy with all of her future transplant-related expenses.

Thank you for being part of Emmy’s journey. Your love and support mean everything. 

-The Winkelman’s