Meet Riley!  Riley suffers from chronic hereditary pancreatitis and visceral hyperalgesia due to a SPINK-1 gene mutation.  She had her first attack when she was 5 years old.  She has been hospitalized countless times over the past 11 years and 8 times just this past year. Each hospitalization lasts 1-3 weeks. She really misses attending school in person and being able to hang out with family and friends.

Riley struggles with debilitating chronic pain due to her condition, requiring a lot of different pain and nerve medications and frequent trips to the emergency department for stronger IV pain management.  We traveled to Utah in February, April and May of this year for surgeries to alleviate some of her pain. These procedures were unsuccessful.

In July, we traveled to Cincinnati Children’s Hospital to be evaluated for a transplant surgery known as TPIAT, or Total Pancreatectomy Islet Autotransplantation.  This surgery is her only option due to her pancreas being severely damaged and scarred from the multiple attacks over the years. We met with 8 different providers over the course of a week and the team unanimously approved Riley for surgery.  For pediatric patients, this highly specialized surgery is only available at a few centers in the country. The surgeons will remove Riley’s spleen, pancreas, duodenum, gall bladder and appendix. They will then need to reconstruct Riley’s gastrointestinal tract. While this is happening, valuable islet cells will be harvested from her resected pancreas and transplanted into her liver. The surgery can last anywhere from 12-18 hours.  She will be in the ICU for at least a week and then remain in the hospital for an additional 2-3 weeks. We will have follow-up care and doctors’ appointments in Cincinnati for another 6-8 weeks following hospital discharge.  After surgery, she will be 100% insulin dependent for at least a year.  The hope is that her transplanted islet cells, now in her liver, will start working again.  It can take up to a year to know if this was successful. 

Riley is ready to trade chronic pancreatitis for diabetes. She will now be a Type 3C diabetic. She is excited for this surgery and hopes to gain a more normal life free from chronic pain!

Once back home in Oregon, we will need to travel back to Cincinnati for follow up care every 3 months for the first year, every 6 months for the second year and then yearly after that.

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.