Lincoln Tanner is an amazing little boy. He loves bubbles, trampolines, and cuddles, and he’s one of only 200 people worldwide with a condition known as KCNT1-related epilepsy.
A few days after his birth, Lincoln began having strange episodes that were later determined to be seizures. When Lincoln turned purple at four weeks old, his mom, Abigail, and his dad, Justin, rushed him to the hospital. Lincoln soon began having about 200 seizures daily, at one point seizing every five minutes. He was diagnosed with malignant migrating partial seizures of infancy (MMPSI). Lincoln’s doctors prescribed medication that helped reduce his seizures tenfold, and the family joined an epilepsy support group to connect with others affected by the disease. When Lincoln was three, one of the group members, a little girl named Emma, tragically passed away from SUDEP. This alerted the Tanners to the risk Lincoln also faced. Now, Lincoln’s parents put him on a hospital-grade monitor every night.
Today, at age five, Lincoln enjoys spending time with his older brother, Cash; older sister, Chloe; and younger sister, Shiloh. He is nonverbal and mostly immobile and enjoys communicating with music. In recent months, Lincoln has experienced the happiest and most comfortable time of his life, with an explosion of smiles and increased alertness.
Lincoln’s family is grateful for the research that CURE Epilepsy is funding into rare epilepsies as well as the wealth of information available on SUDEP, which they believe can help save their son’s life.