Jackson Moore battling effects of TSC

The now 3-year-old was diagnosed with tuberous sclerosis complex (TSC) shortly after birth.
Jackson Moore
Jackson Moore(Family photos)
Published: Apr. 27, 2023 at 11:01 PM EDT
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CHARLOTTE, N.C. (WBTV) - After having his first seizure at only seven weeks old, Jackson Moore was diagnosed with something called tuberous sclerosis complex (TSC).

This now 3-year-old Charlotte boy lives with his mom, Kristen, and dad, Douglas.

”Our pregnancy was normal,” Kristen Moore said. “We were shocked and grief-ridden when given his diagnosis, but, we also had hope. We wanted the doctors to give us the medication or treatment to fix it.”

Turns out, it wasn’t that simple. TSC, Kristen and Douglas soon found out, has no cure. It also impacts every person differently. There is no way to plan for what may happen, or to know what the future holds.

”We have learned a lot,” Kristen said. “We don’t know still if Jackson will be able to function independently; we just wait for the next wave to hit, and do as much as we can in between each wave crashing over us.”

If you start to research TSC—as I now have—you’ll find a group called TSC Alliance. It has two strong taglines: “We will give everything, but up.” and “Hope no matter how complex.”

Jackson Moore
Jackson Moore(Family photos)

Kristen said she and her husband strongly embrace both those messages. Jackson’s journey with TSC began when benign tumors were found in his brain, causing seizures. A tumor was also found on the back of his left eye. From there skin lesions developed on his face and neck, and he has ash leaf spots all over his body.

Jackson also faces challenges with the enamel on his teeth, is prone to dental pits, and has cysts on his kidneys and spleen.

”Jackson’s genetic testing also shows he has a spontaneous mutation in chromosome,” Kristen said. “While there is a 50% chance of passing this on if you have it, more than two-thirds of all TSC cases are spontaneous mutations, like Jackson’s. Since he was born, he has endured numerous ER visits, nearly 30 EEGs, multiple MRIs, and other tests like CT scans, PET scans, and dozens of specialist visits.”

In December 2020, Jackson underwent surgery to have 26 electrodes implanted in his brain, then had laser ablation brain surgery. He has also been diagnosed with autism.

“Our boy has gone through a lot, and I had to leave my full-time career role because of his unexpected medical needs,” his mother said.

Jackson still takes daily strong anti-seizure medications and is in therapy throughout the week. He is assessed as closer to an 18-month-old, than a 3-and-a-half-year-old. Currently, he is nonverbal.

”Jackson has endured more in his short time here than most people have endured in their lifetime,” Kristen said. “Even though he has had brain surgery to try to stop his seizures, it is not a fix for Jackson. It is not a cure for TSC. There is a possibility of seizures starting back again from other tumors in his brain.”

So what is TSC? When you get down to really defining it? TSC is a rare genetic disease that causes tumors to form in vital organs (brain, heart, kidneys, lungs, liver, eyes, skin), and is the leading genetic cause of epilepsy. More than 50,000 people in the United States and one million people worldwide have TSC.

It’s as common as Lou Gehrig’s Disease and Cystic Fibrosis, but the level of awareness is lower, which is why Kristen reached out. Next weekend, she and her husband are working with the TSC Alliance to host the Step Forward to Cure TSC Carolinas Walk on Saturday, May 6. It’ll be at Cherry Park in Rock Hill. The goal is to raise funds and awareness. Registration is free. Open to all.

You can register that day, or online now at http://www.StepForwardtoCureTSC.org.

”We want to further research and find new treatments,” Kristen said. “Ultimately discover a cure. Every person and family impacted is affected in different ways, but we all share the same hope of finding a cure and giving every individual with TSC the ability to reach their fullest potential.”

Kristen is doing all she knows to get her son’s diagnosis out there, because she knows others are living with it, too. On May 2, she’ll be meeting with Charlotte’s Mayor, Vi Lyles, to accept the proclamation of Tuberous Sclerosis Complex Awareness Month in Charlotte.

Welcome to #MollysKids, Jackson.

- Molly