By Jessica Peyton Roberts
Hope was the overarching theme at the Madigan Army Medical Center (MAMC)’s December 5 Tree Lighting Ceremony. “The holidays are a season of hope,” Chaplain Major Wallace declared, suggesting we “tune our spirits to fit the season.”
An annual event, MAMC invites its doctors, nurses, staff, patients, soldiers, and families to observe the Christmas and Hanukkah seasons together. And every year, MAMC honors selected pediatric patients for their resilience and courage in the face of illness by inviting them to help light the Christmas tree.
Prior to the tree lighting, MAMC Commander Col. Ramona Fiorey offered some reflections on the historical significance of Christmas trees, explaining how they have evolved over time into a “reminder of the beauty of the Christmas spirit,” while helping the JBLM community remain cognizant of the special sacrifice many soldiers and their families make during the holiday season.
This year, Madigan Department of Pediatrics chose patients Kye Johnson and Audry Hill to assist Col. Fiorey in illuminating the 18 foot tree, decorated by Mrs. Dorie Carr and Facility Management with red, white, and blue ornaments.
Leading Kye and Audry to the tree, a few seconds of quiet fell before the trio flipped the switch, followed by Chaplain Captain Rabbi Messinger presiding over the lighting of the menorah. Doctors, nurses, and staff members stepped out of their clinics to watch the proceedings, joining the I Corps Quintet in singing “O, Christmas Tree” and “Jingle Bells.”
Speaking with Audry’s mother, Kayla Hill, it was obvious why her daughter was selected to assist with the tree lighting this year. Hill says Audry, was diagnosed with Spinal Muscular Atrophy (SMA) as a baby and given a 50% chance of not making it to her second birthday. Audry turned three on December 2.
Before Audry’s diagnosis, Hill worked as a medic in the emergency room; now she is an Army specialist with Madigan’s Troop Battalion, a position that allows her to be home with Audry as much as possible.
As a medical professional herself, Hill suspected something was wrong when she realized Audry was not meeting the milestones expected of babies within their first year. At the time, they were living in Arizona, where doctors dismissed her concerns and encouraged her to give Audry more time to catch up. However, by the time Hill arrived at Fort Lewis, she knew her daughter needed medical attention. Within three weeks the Madigan Developmental Pediatric Clinic had the diagnosis: SMA.
According to the SMA Foundation, the condition “is a genetic neuromuscular disease characterized by muscle atrophy and weakness. The disease generally manifests early in life and is the leading genetic cause of death in infants and toddlers.” There are various levels of severity, with symptoms encompassing muscle weakness and progressive loss of muscle control and movement. Audry can now support her head and gets around in a wheelchair thanks to Hill’s careful attention to a regular physical therapy routine and a vegan diet.
Cognitive development is not affected for those afflicted with SMA. In other words, despite Audry’s physical limitations, which she explains away as a typical three-year-old by saying, “I’m too short” when unable to perform certain tasks, Audry is a normal little girl who has a reputation for being exceedingly polite, enjoys spending time with her older sister, Anne Marie, and wants a Lalaloopsy doll for Christmas.
Like her daughter, Hill is also a role model for those families coping with chronic illness. “Do your research,” she advises, encouraging parents to be proactive when it comes to their children’s health. “Don’t wait for trouble,” she says, “Know what to do so that your child can live the best life. Living with SMA is not dying.”
For Hill, her goal is to give Audry the best quality of life possible while she is still willing to fight SMA. “However long we get to keep her, we want to make sure she experiences life to fullest,” Hill explains, adding, “She’ll let me know when she’s ready to go. She’ll die when she’s done.”
In the meantime, Hill is grateful to her support network, including other families grappling with SMA and the MAMC medical community, as well as for opportunities such as the Tree Lighting Ceremony for Audry to feel special.
After the ceremony concluded, Audry waited alongside her sister, as excited as any child is when promised a visit from Santa and Mrs. Claus.
The ceremony, symbolizing the beginning of the holidays, also celebrated the season as one of hope and family, resonating with patients and soldiers both.