The Daily Times

Get past the physical therapies, speech therapy, leg braces and doctor’s appointments and beneath them all lies a 5-year-old boy who — like all 5-year-olds — wants to have some fun.

Lucas Hembree lives in Alcoa with his parents Chester and Jennifer Hembree and sister Allee. He has been playing baseball this summer and has the best companion in the form of his service dog, Juno. Daily Times readers first came to know him months ago through a series of stories (April 2, April 16 and May 21). He’s a lovable, outgoing, playful, sometimes mischievous little boy with a smile you won’t forget. This community has embraced him. And his condition, a rare genetic disorder known as Sanfilippo syndrome, is no longer something all of us have never heard of.

Awareness for Sanfilippo

Sanfilippo syndrome is rare, and it’s fatal. Lucas was diagnosed when he was just 2. The disorder has affected his ability to walk and talk. He has developmental delays, has suffered seizures and can’t do a lot of things without assistance. His service dog Juno helps detect seizures and provides some stability in getting around. He also has a home nurse. Sign language has helped Lucas communicate since his vocabulary is only about 15 words.

It’s been amazing how many people across East Tennessee and across the world have followed his story, said Chester. The Facebook account they established to post his updates, activities and medical information has over 35,000 likes.

Lucas was recently the recipient of an awesome gift — a pair of canvas shows, hand-painted with some of his favorite things: big trucks and trains. And it was all because a woman here, Sherrie Bowers, saw Lucas’ story on the national media. She contacted the Hembrees and asked if she could sponsor Lucas a new pair of shoes through a nonprofit organization called Peach’s Neet Feet. The woman who founded the company, Madison Steiner, is originally from Knoxville and a friend of Bowers.

Wanting to help

Peach’ Neet Feet, said Bowers, is an organization that donates shoes to children who are battling cancer or some other catastrophic illness. Bowers said once she saw Lucas’ story, she knew she wanted to get involved.

She was the one who delivered Lucas’ new canvas shoes recently. There is a big truck on one, a train on another and his name emblazoned on the side. Chester said his son was thrilled to receive the gift.

“I was the shoe fairy, the one who got to deliver the shoes to Lucas,” Bowers said. “It was the most amazing experience I have ever had. Madison did such a wonderful job. She does some amazing things.”

Baseball, which is one of Lucas’ favorite pastimes, has also figured prominently in his life recently. Bowers was able to arrange for Lucas to throw out the first pitch at the Smokies baseball game in Sevierville a few weeks ago. She was there on the pitching mound, to lend a hand.

Jennifer said Lucas wasn’t having a great day, and he doesn’t care for mascots in costume, but getting the chance to do that was something her family is grateful for. What made Lucas even more happy was getting to see NASCAR’s Trevor Bayne’s race car. It was on display at the baseball game.

There is even a way to help both this young NASCAR driver and Lucas. There is a website, called http://yourracecar.com where race fans can go and donate money as a sponsor of Bayne. And for just a small donation, your name can be placed on the car Bayne will drive in Bristol in August. If you go to http://yourracecar.com , a portion of what you give will go to the Hembrees.

Casts come off

The last article on Lucas talked about his visit to Shriners Hospital in Lexington, Ky., where casts were put on both legs to try and straighten them out when he walks. Lucas has a habit of walking on his toes. The casts were removed recently, and Jennifer said they did help. They will be taking him back to Shriners Hospital in a few months for a follow-up. Lucas is also scheduled to get some new leg braces, ones that are solid in back instead of bendable.

It’s no wonder that so many people have come to know Lucas or at least know something about his family. His name will be on Bayne’s race car, and it’s also on a giant tow truck being seen all over East Tennessee. Dan’s Advantage Towing has placed a tribute to Lucas on one of its newest trucks. There on the hydraulic system is his name for all to see.

Chester is friends with the owners of the towing company because he works for the state of Tennessee and has worked accidents with Josh Paris, the son of the company owner. Lucas’ name will be on the truck indefinitely, Chester said.

There is one more upcoming event aimed at helping this family and bringing awareness to Sanflippo syndrome. On June 30 there will be a benefit go-kart race at Dumplin Valley Raceway in Sevierville. Entry fees and other monies raised will go to provide for Lucas. Addiction Motor Sports has a driver that’s participating.

Supplying a need

According to Chester, the biggest financial need right now is for a new wheelchair carrier for the family’s van. The one they currently have is old and broken, but they are making due. It will cost about $1,800 to purchase a new, more reliable carrier.

The Hembrees and their network of supporters are easily spotted in a crowd. They typically wear T-shirts that have ‘Prayers for Lucas’ on them. She said she is selling the T-shirts through their Facebook page and will also have purple bracelets in the near future. There are also accounts set up at ORNL and TVA Credit Union, Jennifer said.

The Hembrees are thankful for the support that has come their way as they work to provide their son with a quality life. They are well aware that most children diagnosed with Sanfilippo syndrome don’t live past their early teen years. It’s a fact that’s never far from their minds.

Telling everybody about Sanfilippo syndrome has been a huge part of this journey, Chester said. He was one of the ones who had never heard of it until Lucas’ diagnosis. The way to get attention focused on treatments and a cure is to get it out there for all to see.

These parents, like any others, can’t foretell the future. Chester said they are taking things one day at a time and building memories that will last. One day last week, he was enjoying some time at an area water park.

“We are wanting to give Lucas a lifetime of memories in these few good years,” his dad said.