AAGF is proud to partner with the Mid-West Pediatric Surgical Consortium to produce the Avery’s Angels Gastroschisis Foundation Fellowship Program.
The inaugural Fellowship has been made in Honor of Navaiah Fulk. This fellowship is specifically designed to study the outcomes of patients with gastroschisis within the Mid-West Pediatric Surgical Consortium (MWPSC). Avery’s Angels intends to fund this program for the lifetime of the foundation. The inaugural Fellow selected is Charlene Dekonenko MD –a current surgical resident that will hold the title as Avery’s Angels Gastroschisis Foundation Fellowship in memory of Navaiah Fulk.
MWPSC has already established a gastroschisis registry and is using this to characterize gastroschisis outcomes leading to standardization that will allow us to test prospective questions in the consortium. Papers regarding how to close, manage at birth, etc. are coming from this work. Charlene will be dedicated to these projects this year – working with the entire consortium. Additionally, the MWPSC is collecting worldwide data from adult gastroschisis patients for the purpose of identifying long term morbidity and standardized ways to Rx. They will utilize that data in order to produce studies within the MWPSC, done in the Helmrath Lab, and then that data will be used by the consortium to develop a prospective way to treat – this takes time to do – year(s). The key is getting enough data to know what we are dealing with and this will lead to papers describing the issues along the way
The deliverable action is the creation and implementation of these patient data bases within an established consortium that will dedicate time and effort towards building the infrastructure to get the word out.
Charlene J. Dekonenko, MD of Children’s Mercy Hospital, Kansas City (CMH) was selected for the Fellowship as she has been an excellent research fellow this year at CMH and will continue on as a research fellow with us next year as well. She is incredibly hard working, diligent, and focused and is able to produce excellent research.
Charlene was born in Texas and did her undergraduate training in San Antonio, TX at St. Mary’s University. She then went to medical school at University of New Mexico and has finished her third year general surgery resident at the University of Kansas. She has taken time off from her general surgery residency to pursue additional training in pediatric surgery research as a Surgical Scholar at Children’s Mercy Kansas City. Dr. Dekonenko is married and has one young child.
90% of the funds for the Fellowship were raised during the Annual Avery’s Angels Charity Golf Tournament, which is held on April 14th in honor of Avery’s birthday. Avery is the son of Founder, Meghan and her husband Jared. We at Avery’s Angel’s are so appreciative of Jared, and of the over 70 golfers and 18+ sponsors who made this possible.
On April 15 – the morning after this year’s tournament – Navaiah Fulk, tragically passed away at 18 years old. Navaiah was a Gastroschisis and short bowel syndrome survivor and a two time transplant recipient. She spent her last seven months battling with organ rejection. Our hope is that continued medical research and dedication will help disseminate critical information with regard to the treatment of gastroschisis, as well as long term outcomes. The foundation chose to name this Fellowship in her honor after following her life since the genesis of our foundation. Navaiah endured over 30 surgeries and spent the bulk of her time between Georgetown (her transplant center, hours away from her home and sisters) and Connecticut Children’s Medical Center, dealing with complications arising from transplant. Over the past 10 years, Navaiah and her family made an impact on the lives of so many within the organization. Her mother, Kailani played an intricate role in the early years of the organization, specifically to the transplant community. Navaiah made an effort to provide support to everyone in the children’s unit whenever she was admitted, as well as raising awareness in her hometown for transplant and Gastroschisis – positing smiles and hope wherever she went. Navaiah and Kailani are truly the embodiment of Ohana within the Gastroschisis community at large.