Ridgeview High School
Chronic pancreatitis caused by Spink 1 genetic mutation
Club's City, State:
Redmond, OR
Service Hours:
Date Adopted:

Meet Elias

Read Elias's Story

Eli’s medical journey started at age 2 when doctors found a mass in his abdomen and considered it cancer. Thankfully, this mass was not cancer, and it resolved itself, but no diagnosis was given as to how and why the mass occurred.

Over the next two years, Eli would have “episodes” of intense pain. These were later identified as chronic pancreatitis, some lasting a day or so, some lasting a week or more.

Eli would often be admitted to the hospital for pain management, monitoring, and testing… then sent home without answers or a treatment plan.

In 2018, Eli was diagnosed with Glycogen Storage Disease Type A, also known as GSD IX. This condition is caused by the inability to break down a complex sugar called glycogen.

When GSD IX affects the liver, the initial features are an enlarged liver (hepatomegaly) and slow physical growth. Affected children are often shorter than average and could have delayed development of motor skills.

Between 2018 and 2022, Eli was hospitalized four times with severe chronic Pancreatitis. He often misses school due to extreme pain and refuses to eat for fear of being in more pain. He takes digestive enzymes when he eats and pain medication regularly.

In early 2022, Eli was diagnosed with SPINK1 mutation, a rare molecular basis disease of the Exocrine Pancreas that generally only impacts 2% of the population.

In November 2022, Eli had surgery to drain the most significant cysts that had been found. A stint was placed, and over a liter of fluid was taken from the largest cyst during this surgery.

In early December 2022, Eli and his mom flew to The Pancreas Care Center (PCC) at Cincinnati Children’s Hospital Medical Center. They met with specialists to learn about a total pancreatectomy. This would mean removing Eli’s pancreas and reconstructing his gastrointestinal tract. It is a possibility in the future
so he can return to normal activities without pain.

Eli is 8 years old and loves the outdoors, camping, and going to amusement parks. He loves animals and is kind and caring. He also enjoys road trips with his family.

Eli will be adopted as a Sparrow to Ridgeview High School. Ridgeview students will work hard to raise money for Eli through sponsored community service.