Abigail Tanner's son has a terminal form of epilepsy that can cause 200 seizures a day

By Jason Duaine Hahn
April 11, 2018 04:00 PM
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Credit: Courtesy Abigail Tanner

When Abigail Tanner sat down at the piano to sing to her terminally ill son while visiting his neurology specialist, she had no idea her song would be seen by hundreds of thousands of people.

Tanner, a mother of three, was visiting a Duke University-affiliated hospital when she sang “Never Enough,” a song from the soundtrack of 2017’s The Greatest Showman, to her 1-year-old son, Lincoln. The intimate performance soon caught the attention of nurses and staff from the medical center, who applauded Tanner as she finished the song.

“At the end, the balconies were filled with people who were enjoying it,” Tanner, 34, from Pendleton, South Carolina, tells PEOPLE. “It was really special.”

But the appointment at Duke was just one of many trips the family has taken as they seek a way to relieve Lincoln of the symptoms he experiences from Malignant Migrating Partial Seizures of Infancy, a terminal form of epilepsy, which has left the toddler with developmental delays and uncontrollable seizures.

According to the National Institute of Health, children with MMPSI may appear to develop normally shortly after birth, only to have their progression stalled once they experience the seizures.

The seizures will appear slowly, perhaps only occurring once every few weeks. But soon their intensity and frequency will increase, going from a weekly to a daily occurrence. At one point, Lincoln was suffering from 200 seizures a day.

“He started having seizures at a couple days old, but we didn’t know that’s what they were until four weeks later, and we took him to the hospital because he was turning purple and was having these strange episodes,” Tanner recalls. “At one point Lincoln was seizing every five minutes. That was frightening, but God gave us a peace, as scary and as dark as it did get.”

The institute says MMPSI is rare, as only 100 cases have been described in the medical literature so far. Many patients do not survive past infancy or early childhood, they add.

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Abigail Tanner with her family
| Credit: Courtesy Abigail Tanner

After Lincoln’s diagnosis, he was placed on a series of medications through his neurologist that helped to bring the seizures down from 200 a day, to 20. Because of this, Tanner—along with her husband, Justin, and their two other children, Cash and Chloe—have been able to enjoy more quality time with Lincoln, which includes playing music for him when they have a chance.

Since the last year has been filled with many trips to hospitals for Lincoln’s treatment, Tanner began to notice many facilities had pianos in their lobbies. Now, she often finds herself pulling out the bench and playing for her son during their many appointments. Because Lincoln isn’t verbal and has vision problems, speech and music are important ways of communicating with him.

“For me, I go play any chance I get because it helps me to process what’s going on and also always just gives me a chance to sing to him or encourage others,” she says. “I always get to hear somebody else’s story from sitting at that piano, and that’s always a blessing to me.”

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Abigail Tanner laying with her son, Lincoln
| Credit: Courtesy Abigail Tanner

After playing the sweet song at Duke last month, staff posted a video on their Facebook page, which quickly garnered more than 248,000 views and thousands of reactions. For Tanner, she sees it as an opportunity to raise awareness for MMPSI, which she is already hard at work on through the Facebook page she uses to document her son’s journey, Lincoln’s Road.

For other parents who have children with disabilities, Tanner wants them to hold on to hope in the face of difficult circumstances.

“Stay right where you are, be present, and don’t lose hope,” she says. “God is using this little boy who can’t speak to preach a message to millions of people that there’s hope and that this isn’t the end, we believe the best is yet to come. Lincoln’s life is valuable, and he has taught us so much. It’s hard, but it’s such a blessing to be his mom.”