Tucker was born in September of 2021 after a healthy pregnancy and smooth delivery. He was perfect on the growth charts and we were over the moon as first time parents.

In Tucker’s first year of life, he had some feeding issues and muscle issues that were written off as “normal” baby issues and that he would outgrow them or catch up. At 17 months old, Tucker kept having odd spells where he would become wobbly and his eyes would roll around. As first time parents, we just thought that he was overly tired. One day Tucker was spending the day with his Mimi and he had another one of these odd spells. But when she saw it happening, she knew exactly what it was — a seizure.

Shortly after, Tucker was diagnosed with epilepsy and further epilepsy testing was done to try to determine what could be causing his seizures and developmental delay. At 20 months old, Tucker was diagnosed with POLG and we were absolutely devastated. We had never heard of mitochondrial disease before, and the more we read about it, the more we realized how truly devastating this diagnosis is.

Following his diagnosis, we saw every specialist that we could to learn about the best treatment and care for his disease, but unfortunately, no treatment existed for POLG. Two weeks before Tucker’s 2nd birthday, he had an episode of status epilepticus — an unrelenting grand mal seizure that lasted almost 7 days. During that time, Tucker was intubated and given every anti-epileptic drug that we had access to in hopes of getting the seizure to stop.

In an effort to figure out what was wreaking so much havoc on Tucker’s body, an MRI was done and it showed that he had suffered a stroke in his left thalamus. Neurology then broke the news to us that Tucker would not be able to move the right side of his body when he finally does wake up. After 6 days at Our Lady of the Lake Children’s Hospital in Baton Rouge, Tucker was taken by air-ambulance to Texas Children’s Hospital in Houston for advanced care.

Tucker finally stopped seizing and was transferred two weeks later to Children’s Hospital of New Orleans for inpatient rehabilitation. During our 47 day stay at CHNOLA, I came across the Facebook of a dad with a child who has POLG. This dad, Kevin, had declared war on POLG and was determined to find a treatment for this disease that also greatly affects his son, Liam. I messaged him for advice — to see what therapies and medications have helped his son.

The more we spoke, the more we realized how similar our son’s stories are. Kevin mentioned a drug that sounds promising and that he was working very diligently with a local children’s hospital to create a clinical trial specifically for POLG children. And even though we had never met Kevin, my husband and I knew that this man & his son, and this clinical trial, were going to change our lives. As soon as the clinical trial received approval to start intaking patients, Tucker joined, becoming the first child from the United States to participate in the trial. 

 

Before this seizure episode & stroke, Tucker was a happy toddler who loved to play outside, ride his tricyle, and swim. This stroke left him unable to lift up his head, unable to sit up on his own, and unable to move his right arm or leg. For 6 months following his stroke, Tucker spent the majority of his time in bed or in therapy, trying to learn how to drink out of a straw, eat normal foods, or sit up unsupported. Tucker was constantly getting sick with respiratory infections and would require oxygen and hospital-level of care often.

Tucker started the trial medication 6 months after his stroke, and we saw positive changes in him within 6 weeks. His myoclonic jerks stopped completely and his therapy milestone achievements became more frequent. It was very evident that Tucker was suddenly getting stronger and he wasn’t getting infections as frequently. Tucker has now been on this medication for 2.5 years and we truly believe that it has been the gamechanging factor in his plan of care.

We owe so much to Kevin, Liam, & The Liam Foundation. Little Steps but Always Forward!