Matthew, our brave 4-year-old son, has faced a battle no child should ever endure. Born with pancreas divisum, his life has been marked by constant agony. For months after his birth, we were told he was colicky, allergic to milk, or just a fussy baby. But at 18 months old, we finally received the devastating diagnosis: pancreas divisum, which later progressed to chronic pancreatitis. This condition is incredibly rare in children as young as Matthew, making his situation all the more heartbreaking.

Since then, Matthew has suffered through 18 excruciating episodes of pancreatitis and bravely undergone 5 ERCP procedures, with only one successful stent placement. Watching our little boy in constant pain, knowing there is so little we can do to ease his suffering, has been the hardest thing we have ever faced.

But now, there is hope. Matthew has been approved for a life-changing Total Pancreatectomy with Islet Autotransplantation (TPIAT) at Cincinnati Children’s Hospital. This complex surgery involves removing the pancreas, gallbladder, spleen, and parts of the stomach and intestines. The insulin-producing islet cells are then transplanted into his liver. This procedure will alleviate Matthew’s chronic pain and significantly reduce his risk of developing pancreatic cancer in the future.

The risks of TPIAT are significant, but the potential benefits are life-changing. It offers a real chance for Matthew to escape the cycle of pain and hospitalizations that have defined his young life. However, this procedure means we could be in Cincinnati for up to three months for surgery and recovery, and we will need to travel back and forth for follow-ups.

A journey of this magnitude comes with many expenses:  travel, relocation, follow-ups, treatments, and medications for the rest of Matthew’s life. Matthew and our family are working with the Children’s Organ Transplant Association (COTA) to raise funds in honor of Matthew to assist with these transplant-related expenses. Every single donation to COTA in honor of Matthew, no matter how big or small, is greatly appreciated. COTA funds will be used to change Matthew’s life for the better.

Matthew’s courage and resilience inspire us every single day. Despite his constant pain, he remains a beacon of joy and love. He dreams of running, playing, and laughing without the shadow of his illness looming over him. Together we can make this a reality. 

Thank you for taking the time to read Matthew’s story and for your support, prayers, and love. Together, we can give Matthew the gift of a pain-free childhood and a brighter tomorrow.
With all our love and gratitude.

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.