Lucas and Juno: Boy forms bond with shelter dog trained for service
By Melanie Tucker | (email@example.com)
The story of Lucas and Juno is one about a boy’s love for his dog, but it’s so much more than that.
For starters, Lucas, who just turned 5, has a rare genetic disorder called Sanfilippo syndrome, an inherited condition that has robbed him of much of his neurological functions, hearing and eyesight, and his mobility. There is no treatment or cure, and his parents know should he live beyond 7 or 8, he will likely do so in a vegetative state. Life expectancy is only 14 to 15 years at most.
Lucas was diagnosed with the disorder when he was 2, said his parents, Chester and Jennifer Hembree, of Alcoa. The condition results from Lucas’ body being unable to properly produce enzymes, causing cellular waste to be stored in his tissues and organs instead. The clue that something might be wrong came when Lucas wasn’t developing at the rate of other children his age. Chester said he was watching a television program called ‘Mystery Diagnosis” about a condition that looked a lot like what his son might have.
As it turns out, it wasn’t that exact disorder, but one like it.
“We took him to a geneticist and had tests done,” Chester said. “We found out he was worse than we thought. He has the evil twin sister to the disorder I saw on that show.”
Sanfilippo is a progressive disorder which affects a person’s neurological abilities. Lucas has to wear hearing aids because he’s lost 60 percent of his hearing. He wears braces on his legs and also glasses because the disorder has also affected his eyesight.
As his parents explained, both parents have to be a carrier in order for a child to develop Sanfilippo Syndrome III-A, the type that Lucas has. He has an older sister, Allee. 8, but the family doesn’t know if she is a carrier or not. Tests can confirm that later on, but they are expensive, Chester said.
In need of a companion
It was Chester who one day came up with the idea of possibly getting a service dog to help his son get around better and keep a watchful eye. Chester had worked for the Blount County Sheriff’s Office and helped with training of the K-9 officers. But when he looked into the cost, he knew that was beyond his family’s budget. The dogs cost $15,000.
But this family didn’t give up. Chester said he began searching on the Internet for the breed of dog that is put into service, the Belgian Malinois. Then he found one, at a shelter in Johnson City.
“I called the shelter and found out the dog was there but it was scheduled to be euthanized,” Chester said. “We told them not to do anything, we are on our way.”
So Jennifer, Chester and Lucas made the trip to Johnson City that next day and gave the dog a look. “Juno took up immediately with Lucas,” Chester said. He then took the dog outside on a leash and she responded perfectly.
The Hembrees took Juno home and Chester began training her for mobility. The couple needed a dog who could keep Lucas from running and one that could walk next to him and keep him from falling. Little did they realize Juno would help in another huge way.
Alert to a problem
Lucas was sitting in his wheelchair one day and Juno was just going around in circles and nudging him, the couple recalled. They finally decided to check Lucas’ oxygen level and discovered it was dangerously low. That’s what happens before he goes into a seizure, Jennifer said.
That sealed the deal for this family. Juno has been trained to always be at Lucas’ side and she has proved she is up to the task. She’s by him when he sleeps, eats or watches television. A companion for life.
Lucas’ future is unknown as far as his disease’s progression goes. He is on a feeding tube and can communicate using a few words and also sign language. Lucas also has a computer that helps him.
What’s been amazing to the Hembrees is how far and wide their story is reaching. MSNBC has featured them nationally, and Knoxville television stations have picked up on the beautiful story. As a result, Lucas has received well-wishes from around the globe — from NBA players, entertainers and everyday people touched by this story. Jennifer has started putting together a scrapbook of all of Lucas’ memorabilia.
They have met other families with children suffering from Sanfilippo syndrome. They can pick them out of a crowd: the children look just like Lucas, they said. Button nose, thick eyebrows, ears that are a little different from most. Many of the families correspond on the Internet and have formed groups to get the word out about this rare disorder in hopes of one day finding a cure.
In the meantime, the Hembrees will continue to take Lucas to therapy, and he will be going to Shriners Hospital soon so they can look at possible treatment options for his legs. He has a homebound teacher that comes twice a week and a home health nurse.
Jennifer said they been very open about Lucas’ condition and helps others who reach out to them.
“I couldn’t imagine facing this alone,” she said.
Chester and Jennifer don’t know how or why Juno ended up in an animal shelter in upper East Tennessee. She was probably more than her owner could care for, is Chester’s theory. “Belgian Malinois need to have work to do,” he said. “They can be destructive if they don’t.”
Lucas, the mischievous, playful, vocal 5-year-old who has stolen the hearts of many, including Juno, has a sweet disposition that becomes evident right away. He greets everybody like a friend. Chester said despite all he’s been through, he remains a ray of sunshine for all who meet him.
“He wakes up every morning with a big smile on his face and full of laughter,” Chester said.
Jennifer sometimes has to step back from it all and take a deep breath. “It is just amazing what one little 5-year-old has done,” she said.
They know they are putting a face on a disorder few people know about. Maybe hearing Lucas’ story will be the spark that’s needed for more dollars for research. The more ears that hear about it, the more likely that happens, these parents said.