By Amy Fillingame
Mommy to Jamison
Leigh Syndrome
Born January 2017
In August 2018, when Jamison was 18 months old, he went to the ER because he was struggling to breathe. He was breathing very fast and working hard to breathe, pulling and retracting in his belly, ribs, and neck area. He was admitted and we were told he had bronchiolitis. He was given oxygen and spent a few days at Mercy before being discharged.
About a month later, basically the same thing happened. Jamison was outside riding a Big Wheel in our yard when I noticed he was breathing very fast and working hard to breathe. I counted his breaths, and he was at 62 breaths per minute, so I took him to the ER at Mercy. He was admitted with rhinovirus, enterovirus, and pneumonia.
Each day Jamison continued to decline. Eventually, when you would say his name or talk to him, there was almost nothing there—no reaction. On day eight, Jamison couldn’t even hold his head up during a bath, so his nurse called the doctor. The respiratory therapist did a blood gas test on him, and his levels were so high they wouldn’t even register. The doctor rushed in, and they began doing multiple interventions before ultimately having to intubate him. X-rays showed his lungs were much worse than they had been a week earlier and were filled with mucus and congestion.
Two days later, because he now had a secure airway, doctors decided to do an MRI to see what else might be going on. I was glad they ordered the MRI because I had kept telling them there was something more wrong with my son than just pneumonia and the viruses, even though I knew those illnesses could make a child very sick.
When they brought Jamison back upstairs after the MRI, I immediately knew the results weren’t good based on how the doctors and nurses were acting. I remember getting nervous and texting family members that I thought something was wrong. The PICU doctor and Jamison’s nurse pulled me into a conference room. As the doctor started talking about the diagnosis, I stopped her and said I needed my boyfriend there with me. She insisted on calling him immediately and telling him to come to the hospital.
After the PICU doctor and neurologist shared the MRI results, I couldn’t think straight. They told us our 19-month-old son had Leigh Syndrome, a mitochondrial disease, and that he might not live to see his second birthday.
I was completely blindsided. I thought I had brought a healthy little boy home from the hospital, and suddenly my entire world had been flipped upside down. Once the shock started to settle in, we realized we had to tell Jamison’s siblings and somehow explain what this syndrome was, even though we had no idea what our future would look like. My biggest fear was losing my baby.
His condition continued to be severe. Jamison was intubated twice, and each time his gas levels became dangerously high. After three weeks on a ventilator, he underwent surgery to receive a tracheostomy and a gastrostomy tube. Months later, once his breathing had stabilized with the trach and ventilator support, he was discharged to Ranken Jordan, an intensive therapy hospital.
Jamison remained dependent on a ventilator until 2023, when his breathing improved enough to transition to another machine and come home. Jamison’s second hospital stay, when he received his diagnosis, was by far the longest. Altogether, it lasted 276 days. He has had many other hospitalizations since then, but most have only lasted from a few days to a couple of weeks.
Hospital stays are hard on our family because Jamison has four siblings at home. I always stay with Jamison while he is hospitalized. During that long admission, I stayed at Mercy with him the entire time. When he transferred to Ranken Jordan, I would spend afternoons with him there and evenings at home with my other children. Sometimes I would bring the kids up to visit him. We did the best we could to balance everyone’s needs.
Before all of this happened, our hopes and dreams for Jamison were simply the hopes every parent has. We expected him to grow up healthy, play with his siblings, and enjoy a normal childhood. After his diagnosis, our hopes shifted. We focused on helping him survive, heal, and continue making progress.
His diagnosis has impacted every part of our lives. We had to learn how to care for a trach and G-button. We helped him relearn how to sit up and walk. He lost all of his speech and became nonverbal, so we learned sign language to communicate with him. Even today, Jamison faces challenges with partial speech loss, learning disabilities, weakness on his right side, and a weakened immune system that causes him to get sick frequently.
I first learned about On Angels’ Wings in 2019 after seeing another trach family’s photos online. At the time, my biggest hope was simply to have professional photos taken by someone who was comfortable working with a medically complex child. I scrapbook, so documenting Jamison’s journey has always been important to me. Being able to be in the photos instead of always standing behind the camera meant so much.
We had our first session in the summer or early fall of 2019 and had a wonderful experience. I didn’t know much about OAW at first beyond the photography, but I was excited to learn more about everything they offered.
Today, Jamison is still fighting. Leigh syndrome is a lifelong diagnosis, but he continues to beat the odds and prove doctors wrong. Having his trach removed in May 2025 was a huge milestone. He still uses his G-button to help with nutrition because gaining weight remains difficult, but overall, his diagnosis has become such a normal part of our lives that sometimes we almost forget how far he has come.
Jamison is a very loving, caring, and happy boy. He always has a smile on his face. No one would ever guess everything he has endured because he approaches life with so much joy. He loves meeting new people and making friends, and his positive attitude is contagious.
My hope for the future is simple: I want to see Jamison continue thriving and proving doctors wrong. I want him to keep succeeding without needing his trach and continue accomplishing things people once said he wouldn’t be able to do.
The photos from On Angels’ Wings mean so much to me. I’ve always loved pictures, and as a scrapbooker, preserving memories is incredibly important. I love being able to look back and see how much Jamison has changed and grown over the years. The community support means a lot too because there are times when you feel completely alone or like nobody understands what you’re going through. Finding a community like this reminds you that you’re not alone and that other families are facing similar challenges.
I would tell other families how much the community and support offered through On Angels’ Wings can help. The photos are wonderful, but the understanding, connection, and support are just as valuable.
