Help with Eli's medical journey

Family and friends are arranging this fundraiser for our dear friend Rhianna Basye and her son, Eli.

For the last five years, Eli (7) has dealt with unexplained intense pain in his abdominal area. Eli has been subjected to a gamete of medical testing, spent countless nights in the hospital, and met with numerous doctors that typically result in no real answers about his condition.

Eli's medical journey started at age 2 when doctors found a mass 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, which later was 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. The "solution" during hospital stays was to treat Eli's pain with serious opioids, be sure he was not dehydrated and wait. However, Eli and his family would leave without answers or a treatment plan.

In 2018, Eli was diagnosed with Glycogen Storage Disease Type A, also known as GSD IX, a condition caused by the inability to break down a complex sugar called glycogen. The different forms of the condition can affect glycogen breakdown in liver cells or muscle cells and sometimes both. A lack of glycogen breakdown interferes with the normal function of the affected tissue.

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, such as sitting, standing, or walking, and some have mild muscle weakness.

Between 2018 and 2022, Eli was hospitalized at four hospitals with this severe chronic Pancreatitis. He often missed school due to extreme pain, refused to eat for fear of being in more pain, and generally missed out on being a carefree little boy due to intense pain.

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. The SPINK1 mutations in the genes of pancreatic enzymes cause chronic Pancreatitis by misfolding protein structures responsible for Pancreatitis.

During Eli's last hospitalization at Doernbecher, several cysts were identified on and around Eli's pancreas. In early November, Eli had surgery to drain the most significant cysts and had a stint placed to continue draining those cysts. Over a liter of fluid was taken from the largest cyst during this surgery.

In the months before his surgery, Eli's family diligently worked to find specialists in the broader United States who may be able to provide medical answers for Eli's condition. Through Eli's family's and close medical team's hard work and dedication, help has hopefully been identified.

On December 5th Eli is headed to The Pancreas Care Center (PCC) at Cincinnati Children’s Hospital Medical Center. PCC is one of only a few institutions in the United States offering total pancreatectomy with islet autotransplantation (TPIAT) for patients as young as three years old, which Eli is a candidate for. The procedure involves the removal of the pancreas and the reconstruction of the gastrointestinal tract. It has made it possible for many children to return to their normal activities without pain.

Eli and his mom will spend several weeks with a group of doctors and surgeons specializing in pediatric conditions of the liver and pancreas. Eli will meet with a physical therapist to address these diseases' physical impacts and diabetes specialists to develop long-term care plans. It is unknown at this point how many trips Eli will need to make to Cincinnati over the next several months. We anticipate several trips with the probability of more surgical procedures. Surgically removing the pancreas is a dramatic step, and the recovery process can take several months.

The plan is for Rhianna to continue being Eli's primary care provider throughout his medical journey. Being a self-employed, single mom of 3, Rhianna needs our help.

Due to the intensity of medical needs in the last six months, the upcoming travel to Cincinnati, and the rapidly mounting medical bills and related expenses, this gofundme was established.

If you would like to assist with the financial burden, any donation through GoFundMe would be greatly appreciated. All funds raised will go directly to Eli's medical costs and related travel expenses for Rhianna and Eli.

We know that not everyone can give monetarily to help Eli and Rhianna. Donations that would also be beneficial are Alaska Airlines miles or hotel points that could be used toward travel.

Please send a message, and we can coordinate air miles and or hotel points.

On behalf of Rhianna and Eli, their family, and closest friends, we greatly appreciate the outpouring of love, prayers, and support shown over the past several years, recent months, and the months to come.