Meet Jenna - A Proud Patient Champion for Nationwide Children’s Hospital
Updated: Nov 1, 2022
To recognize and support the various charities that are close to the hearts of our employees, Resch, Root, Philipps & Graham is providing each staff member an opportunity to select their favorite charitable organization, introduce the charity in a blog post, and then make a donation in the employee’s name to that special cause. This month, Layne Ogden (who works in estate administration) shares the story of how she came to know the Stang family and their daughter’s journey at Nationwide Children’s Hospital.
October 2022 Layne Ogden A high school friend of mine, Jamey Stang, has a beautiful wife and three lovely daughters – one of which is the focus of my blog. Her name is Jenna and she is a Proud Patient Champion for the Nationwide Children’s Hospital Columbus Marathon & 1/2 Marathon this month.
Jenna’s journey at Nationwide Children’s Hospital began when her parents, Jamey and Tammy, noticed she wasn’t reaching the typical developmental milestones. They visited several departments to investigate what was causing her delays. Once her sister was born a few years later and showed the same characteristics, it was suspected to be genetic. Jenna was diagnosed with a rare condition called Congenital Disorder of Glycosylation (CDG). At that time, only 100 cases existed in the world. The future for most kids with CDG isn’t promising; Jenna’s parents were determined Jenna would defy the odds and write her own story.
What are congenital disorders of glycosylation (CDG)? The Mayo Clinic offers this description: All cells in the human body construct sugar chains attached to proteins called glycoproteins. The construction process, called glycosylation, is essential for the normal function of proteins and lipids throughout the body. The process has many steps, each initiated by an enzyme. Unfortunately, people with certain genetic makeups can lack any one of these enzymes. People with congenital disorders of glycosylation lack one of these enzymes and can experience a wide range of symptoms. In fact, defects in the glycosylation process affect all of the body's organs and almost all of its functions, including those in the brain, liver and heart, as well as the gastrointestinal, muscle, hormone, clotting and immune systems.
Jamey and Tammy set out to do everything they could to give Jenna the best start. She attended physical and occupational therapy every week to monitor developmental milestones. Jenna mastered each skill, reaching for a toy, crawling, and sitting unassisted. CDG created many bumps in the road, but nothing was quite as shocking as the news she received immediately following an MRI. The then 9-year-old Jenna had two brain tumors (one that covered ¼ of her brain) and that required surgery in the upcoming days. Tammy and Jamey recall their first meeting with neurosurgeon Dr. Jeff Leonard: “His manner was one of empathy and put our minds at ease…he made us very comfortable in our decision to move forward.” Between the ages of 9 and 18, Jenna has undergone three brain tumor surgeries and is now tumor free. Athletics is a huge part of Jenna’s life. She has been able to compete with the Hilliard Bobcat Special Olympics in track and field, basketball and bowling and has won more than 40 gold and silver medals. “Every day we look at Nationwide Children’s as a gift to our family...each and every doctor, nurse and staff member made an impact on Jenna’s life.” She is super excited about cheering on the participants who come through her mile.