Luca in his wheelchair at home. Photo provided by the George family
Luca and his parents Mariah & Nicholas George. Photo provided by the George family
Luca in the hospital getting an EEG to look at his seizure activity. Photo provided by the George family
A Palm Coast family is turning to the community for help getting a seizure-alert service dog for their 4-year-old son, Luca George, who lives with an ultra-rare genetic disorder that causes drug-resistant epilepsy.
Luca has SPATA5L1 disorder, a genetic condition so rare that his mother, Mariah George, said he is one of approximately 60 children in the world who have been diagnosed with it. Luca also has cerebral palsy, hearing loss and a feeding tube.
But despite everything he deals with, his mother describes him simply as a happy little boy.
“Luca is a very happy boy despite everything,” George said. “He's sitting here smiling at me right now.”
The most pressing concern for Luca and his family is his epilepsy. George said Luca has experienced seizures for most of his life, and more than a dozen medications have failed to bring them under control.
Currently, Luca is experiencing up to about 10 seizures a day. Just a few months ago, George said, he was having more than 40 a day. Over the past six months, the family has also noticed that his seizures have become longer and more difficult for him to recover from.
The seizures don't stop when Luca goes to sleep.
That's one of the biggest reasons his family is trying to raise $18,500 for a seizure-alert service dog.
During the day, Luca is almost always under someone's supervision. At night, however, his parents have to sleep, and George said available wearable devices and cameras aren't well suited for Luca and the types of seizures he experiences.
A trained service dog could recognize when Luca is having a seizure and bark to alert his parents.
“That could honestly make all the difference in potentially even saving Luca's life,” George said.
A diagnosis after months of searching
Luca's medical journey began when he was about 6 months old.
George said she and her husband noticed their son wasn't reaching some of the milestones they would expect at that age. They spoke with his pediatrician and began working with Florida's early intervention services.
When Luca was about 8 months old he began displaying unusual movements. His parents suspected seizures and took him to a children's hospital in Orlando, where he was diagnosed with epilepsy and global developmental delay.
The family then began searching for an underlying cause. After three rounds of genetic testing and other tests, Luca received his genetic diagnosis when he was about a year and a half old.
Today, caring for Luca is a 24-hour responsibility.
A nurse works with him Monday through Friday so his parents can work, but Luca requires constant supervision. He uses a wheelchair, is fully dependent on others to help move him and receives his nutrition through a feeding tube.
For his parents, nighttime brings a different kind of worry.
“We go to bed every night worried that what if he has a seizure tonight and we don't know, we don't realize it and something happens to him,” George said.
A seizure-alert dog, she said, would mean knowing someone is watching over Luca even when his parents can't.
“We're parents, we're human, we have to sleep,” she said. “It would, I mean, just bring so much peace of mind to our family.”
Family hopes to raise $18,500
The family's cost for Luca's service dog is $18,500. George said the nonprofit training organization covers approximately the other half of the dog's total cost, which she estimated at between $30,000 and $40,000.
The family is able to make payments in installments, but insurance does not cover the service dog.
“Dogs, though life-saving, unfortunately aren't something that's covered by insurance,” George said.
The George family is accustomed to facing major medical expenses that insurance does not always cover. George said the family recently received a medical bed for Luca that cost about $30,000, putting the $18,500 they need to raise for his seizure-alert dog into perspective. “These things are unfortunately really expensive,” George said.
Donations for Luca's dog can be made through the family's Givebutter fundraiser. Donations go directly to Dulebohn Service Dogs, a nonprofit organization, and will be designated for Luca's dog.
The family is also holding a “Pay What You Can” yard sale Aug. 22 and 23 at 20 Llama Trail in Palm Coast, with all proceeds going toward Luca's service dog.
George said the family has been spreading the word through social media and reaching out to friends, family and members of the community for support.
Helping other families, too
Luca's parents' efforts extend beyond their own son's medical needs.
George and her husband founded the SPATA Foundation, a nonprofit patient organization created to support children affected by Luca's disorder and a related disorder. The organization advocates for and helps fund research aimed at finding potential treatments.
George said she would normally be fundraising for that research, but she has temporarily shifted her attention toward Luca's immediate need for a service dog.
More information about the organization is available through the SPATA Foundation.
For George, raising awareness is also about helping people understand what life looks like for children such as Luca and their families.
While other parents may be preparing their 4-year-olds for preschool or taking them to playdates, George said her family's days often revolve around therapy appointments, surgeries and medical care.
“Kids like Luca exist and that's okay,” she said. “He deserves, you know, happiness and deserves to get love and, you know, things specifically for him as well.”
George said she hopes people recognize that children have different abilities and different needs — and that those differences don't diminish the lives they deserve to have.
“Sometimes people are different,” she said, “and that's okay.”
Donations for Luca's seizure-alert dog can be given here: https://givebutter.com/luca-seizure-alert-service-dog
