dog in light

Lucia’s name means “light.”

Caregivers are usually loving, but what happens if they’re furry, too, and like to lick your face a lot?

Spencer W, 8, of Dacula, Ga., was diagnosed with epilepsy when he was 3 years old. At the time of this interview, he was in second grade and got his seizure response dog, Lucia, through the Canine Assistants program in the summer. He calls her his best friend. More than that, she is an added caregiver to the family. His mother, Amy, says, “It gives us an extra set of eyes and ears—watching out for him, listening to see if he’s going to have a seizure and then getting help if he is.”

Reassurance and Independence

Lucia is especially helpful because Spencer has nocturnal seizures. Before they got her, Amy had to get up every 30 minutes during the night to check on him. Then they relied on video cameras.

Now, they feel reassured to know Lucia is in the room with Spencer at night and can alert them if he’s having a seizure. She gives Spencer an added measure of independence, too. Now if he wants to go outside to play, he doesn’t have to be shadowed by his mother constantly. He has his dog with him—who also happens to be trained in recognizing seizures.

What does Lucia do when Spencer has a seizure?

Seizure response dogs are trained to remain next to a person with epilepsy during the course of a seizure and summon help. Certain dogs even seem able to predict and react in advance of an oncoming seizure. So, while they are not a substitute for actual human supervision, they are definitely an added, if slightly unconventional, member of many family caregiver teams.

At first, the family had to get used to Lucia’s way of signaling them. Amy says, “She’d hop up and begin to whine. The only problem with that was, we thought she had to go to the bathroom.” It turns out she was signaling that Spencer might be about to have a seizure. Amy says several times Lucia has come over to lick her hand and about 15 minutes later, Spencer has had a seizure.

Ambassador for Epilepsy Awareness

Spencer is quite vocal about his epilepsy and enjoys educating people about his condition. Lucia is the perfect co-ambassador for him because she attracts a lot of attention, which gives Spencer plenty of opportunities to talk to people and explain his condition. Amy says the added attention helps get the word out about epilepsy.

It’s changing people’s opinions and ideas and helping to erase the stigma that’s attached to epilepsy, to see this kid that’s so full of life and personality. For him to say, ‘I have epilepsy,’ I think shatters a lot of preconceived notions about what that is." - Amy

Amy also says they have tried to instill in Spencer the knowledge that while he has a condition some people might view negatively, it’s his job to take his epilepsy and turn it into a positive so he can help other people. He seems to understand.

Lucia’s name means “light,” which Spencer likes. He says, “Mom, that’s so cool because when we introduce her to people, it’s like telling people about light — that there can be light in their lives.”

Reviewed By: 
Michael Gruenthal MD, PhD
Elaine Kiriakopoulos MD, MSc
Thursday, April 4, 2019