Some moments in life break your heart in ways you never expect. That’s how Kristian Tucker felt when doctors told her that both of her sons had a rare and fatal illness. She said it was the day she learned what true devastation feels like.

The first signs appeared when Michael, then four, started having small spells that didn’t seem serious. His eyes would roll, or he would pause while playing, and the family thought it was just a new habit. But as it happened more often, they knew something was wrong.

Doctors tried different medicines and then ordered genetic tests. That’s when the family received the news no parent ever wants to hear. Six-year-old Michael had Batten disease, a condition that causes seizures, vision loss, and childhood dementia. Soon after, they learned their two-year-old son, Oliver, had it as well.

Kristian said the diagnosis felt like the ground had dropped beneath her feet. She had never heard of Batten disease and broke down when she read what it meant. The illness will slowly take away the boys’ abilities and gives them only limited time.

Still, the family is doing everything they can. Both boys are now receiving treatment to slow the disease and help them stay comfortable. Kristian says they only tell the children that they are sick and doctors are helping them feel better.

Through everything, Michael and Oliver remain happy and full of light. Michael, who has a speech disorder, still brightens every room with his smile. And their laughter reminds the family to hold on tightly to every precious moment they have.