Lucas Hembree is like any 2-year-old. He loves to laugh, play, clap and just have fun. He has spiky blond hair and eager eyes, and you just know this little boy is going to make you smile.
And he does.
Behind the smiles he brings to others and the quick smile he so often wears himself is a courageous little boy who is fighting a terrible disease. His fight -- and that of his parents Chester and Jennifer Hembree -- is made a little easier through a United Way supported agency called Birth to 3.
As Blount County United Way works to wind up their fundraising campaign on Nov. 20, the Hembree’s wanted to share what the agency means to their family.
Lucas as MPS IIIA, Sanfilippo Syndrome, a rare degenerative disorder that is slowly robbing him of his ability to hear, see and move.
“It is an Autosomal Recessive disorder,” Chester Hembree said. “His body doesn’t produce the enzyme that breaks down tissue cells that make up bones, tendons, cartilage in the body. Without that enzyme, the body doesn’t break them down, so it stores them in the brain, the central nervous system and in his eyes - places they shouldn’t be. It’s a progressive disorder, and, as he gets older, he will eventually lose the ability to walk.”
Children Special Services and TIS - Tennessee Early Interventions, which runs Birth to 3, helped Lucas get hearing aides for both ears. Plans are in the works for help with the therapy Lucas will need as he grows and his joints get stiff.
Because Lucas has only a 10-word vocabulary, Birth to 3 is also helping him learn sign language.
The couple first noticed something was wrong about a year ago. “He was 13 months old, and we started noticing development delays. He was lagging behind, and we noticed other things, too,” said Chester. “We started checking and one thing led to another. They thought he had a cardiac issue, and then his tonsils were swelling badly. They tried to take them out, and he died twice on the operating table. They resuscitated him.”
The couple went to doctors in Nashville at Vanderbilt Medical Center and at the University of Tennessee searching for answers.
“We went to a cardiologist at Vanderbilt, and she noticed his liver was swollen. Then we got final lab results from a geneticist’s office at UT. They said he had MPS III.”
The prognosis for a youngster with MPS 3 A isn’t good. “As he gets older he will eventually go into a vegetative state,” Chester said. “The life span of kids with this disorder is 12 to 14 years.”
Chester Hembree said there are 14 types of MPS and Lucas’ is the worst. “It is the shortest lifespan and has the most severe effects,” Chester Hembree said. “As he gets older, he will have neurological damage and severe mental retardation.”
Chester and Jennifer Hembree said the disorder is very rare. The disorder affects one in 70,000. “He’s only one of two in the state of Tennessee who has it,” Jennifer said. “The next closest one is in Memphis.”
Lucas averages about three hours of sleep a night and Chester Hembree said doctors aren’t sure why. “I think it’s where the brain is going through chemical changes,” he said.
As the family struggles with the changes they are going through as well, several area agencies supported by United Way as well as emergency service agencies have taken to Lucas and offer support for him and his family.
“We’ve gotten a lot of help,” said Chester. “Between Children’s Special Services, Birth to 3 and Tennessee Early Intervention, the help has been welcome,” Chester said. “There is a lot of stuff insurance doesn’t cover.”
Jennifer works as a phlebotomist and certified nurses assistant. She started work at Parkwest Hospital in 2007 but has since had to cut back to about 8 hours of work a month to stay home and take care of Lucas. Chester works with TDOT Help Unit, has a part-time job with Rural/Metro Ambulance Service and also volunteers with Blount County Fire Department.
Chester has worked in emergency services in Blount County for 15 years. He started off as a deputy with the sheriff’s office. Members of Alcoa and Maryville police departments and the Blount County Sheriff’s Office adopted Lucas and even organized a softball tournament to raise money to pay medical expenses. A motorcycle ride also was organized.
“All the local agencies have all really stuck up for Lucas,” Chester said.
Chester’s insurance through his TDOT job and TennCare Select for Disabilities helped cover the cost of Lucas’ $8,000 wheelchair. Other needs were picked up by United Way-supported agencies like Birth to 3, said Chester. For one, the agency recommended the style of leg braces the Hembrees got for Lucas.
Lucas has therapy several times a week. “On Tuesday he has water therapy and physical therapy and on Wednesday he does Birth to 3 and goes to the Blount Wellness Center for speech therapy,” Jennifer said. “We run into a lot of stuff that’s not covered and that’s where Tennessee Early Intervention, Birth to 3 and Children’s Special Services comes into play.”
Birth to 3 provides Lucas with occupational therapy, speech therapy, physical therapy, and offers him time to socialize with children his own age. They help him communicate and work with him at the center once a week, and once a month at home, where they support the family and work with them.
Chester said United Way has given a lot to those organizations. “If it wasn’t for United Way helping these organizations, there’s no way they could help us and no way we could afford some of the equipment that makes Lucas’ life better,” Chester said.
Sandra West, Birth to 3 coordinator, and she said she believes Birth to 3 not only gives Lucas the medical help he needs, but they help his family, too.
“When you have a child diagnosed with a special need or a genetic anomaly, it is heartbreaking. It crushes your dreams. It is very hard to deal. The Hembree’s have the added burden of dealing with a son who has a life expectancy that’s very short,” West said. “We would like to think we’re giving the families emotional support as well as providing therapeutic intervention for Lucas.”
Chester Hembree said United Way helps a lot of organizations in the community. “People never do realize it until they get to looking, and they actually need those services,” he said.
Before her son was born, Jennifer Hembree never contributed financially to United Way. Then Lucas was born, and she saw how important United Way is in helping agencies help the community.
“I thought, ‘I’m not giving to United Way. I don’t see what they do.’ When I started working at Parkwest (Hospital), I became more aware of what the agency supports. I started giving, even though it was as little as $5 out of each paycheck. Now I see first hand what all they do. I am very appreciative of what they do,” she said.
The Hembrees say their little boy still has plenty of life in him and it’s evident when he giggles and throws his teddy bear named “Bear-Bear” toward his dad in the living room.
“Looking at him, you would think he was perfectly normal,” Jennifer said. “He is such a comedian! He is so funny. There’s never a dull moment. He’ll either wake up in the morning or at night clapping his hands and playing. He is full of life.”
Chester said Lucas can take anyone who is having a bad day and make them smile. “He’ll find a way to make you smile,” Chester said. “He will steal your heart in a minute.”
Birth to 3 is an early intervention program for infants and toddlers with developmental delays and disabilities and their families. The Individuals with Disabilities Education Act (IDEA) provides a framework for a comprehensive program and coordinates developmental, health and social services within the community.