Tony, Pam, and Jessie Stinchcomb

My name is Jenna Eckstein and I'm the middle daughter of Pam and Tony Stinchcomb. Most of you know my family's story. I have two sisters, Jessie and Jordan, both born with an incurable, progressive disease called NGLY-1. In 2023, Jordan lost her fight with NGLY-1 and died peacefully in the hospital surrounded by her family. Just over two years later, my family is now facing the heartbreaking reality that Jessie will soon lose her fight, too. Jessie came down with pneumonia during her Make-A-Wish Trip in December. For children with NGLY-1, something as simple as the common cold can mean weeks of hospitalization or worse. Jessie has had pneumonia numerous times over the last two years, but this time it has taken a massive toll on her body, leaving her in respiratory failure. My parents and Jessie spent the days leading up to Christmas, and several weeks after, in the hospital fighting to get Jessie well. Unfortunately, episodes where Jessie suffered from lack of oxygen, the recurring pneumonia, seizures, and severe scoliosis have taken their toll on Jessie's fragile body. The decision was made to bring Jessie home and allow her to spend her remaining time in the comfort of her bedroom, with her parents and her family. My mom is now being faced with the dilemma of needing to return to work in order to pay bills, or staying home with Jessie in her final few weeks - a decision no parent should have to make. When Jordan passed in 2023, we were truly amazed and touched by how our community blessed my parents by sending prayers, meals, and money to cover funeral expenses. On behalf of my parents, I'm humbly coming to our community, friends, and family once again to ask for help in their time of need. My family is eternally grateful for what our community has already given. Anything you feel led to give will help my parents spend what precious moments Jessie has left by her side and help cover any expenses yet to come.

Update: Jessie lost her fight on Sunday, February 16th, 2025. She died peacefully in her bed surrounded by her family.