| Sources |
- [S27] The Daily Times, http://www.thedailytimes.com/, (Blount County, Tennessee), 17 Oct 2012.
Juno recovers, goes home with pal Lucas
By Melanie Tucker | (melt@thedailytimes.com)
It’s the tale of a boy and his dog, but she’s not just any dog. And he’s not just any boy.
After spending a few days at Village Veterinary Hospital in Maryville, a healthier Juno was reunited with her favorite little boy.
Juno, a Belgian malinois, was diagnosed with colitis after being taken to Village on Sunday by his family, Jennifer and Chester Hembree and their 5-year-old son Lucas. Juno is Lucas’ service dog who is very much needed and appreciated.
That’s because Lucas has a rare, fatal genetic disorder called Sanfilippo syndrome that affects his ability to walk and talk. Juno is at his side 24/7 and that is just where she wants to be.
But when Juno became sick, she had to get treatment at Village. Mom Jennifer said Lucas couldn’t understand why his friend was missing; Juno, likewise, was uneasy over being separated from Lucas.
But late Tuesday afternoon, Dr. Edwin Lehman at Village released Juno back to the Hembrees, who took her to their Alcoa home to recuperate and take back her duties with Lucas.
It was hard to tell who was more excited about the reunion — Lucas or Juno, Jennifer said.
Jennifer said she is grateful for the care at Village and the community that embraces her son. Blount County Society for the Prevention of Cruelty to Animals initiated a fundraising effort so Juno’s medical bills would be paid. More than $2,700 was raised.
“Now it’s just a matter of getting her to take her medicine,” Jennifer said.
There are still some test results to go over, but the family is hopeful this is the road to recovery they all need. Lucas has suffered numerous setbacks recently as well. He has battled strep throat, e.coli, salmonella and other infections.
Getting Juno back is definitely a positive, Jennifer said.
- [S27] The Daily Times, http://www.thedailytimes.com/, (Blount County, Tennessee), 15 Apr 2012.
Therapy, home-schooling part of Lucas’ struggle with genetic disorder
By Melanie Tucker | (melt@thedailytimes.com)
Pool therapy, land therapy, speech therapy, occupational therapy and home school lessons — a full plate for Alcoa’s Lucas Hembree, who’s fighting a rare genetic disorder.
Lucas just turned 5 recently and was the subject of an article in The Daily Times back on April 2. His parents are Chester and Jennifer Hembree, and he has an older sister, Allee, who is 8.
But his world certainly stretches further than his own circle of family. Lucas has been the subject of many national news programs and to date, has about 30,000 friends and followers on Facebook.
His genetic condition is called Sanfilippo syndrome, and this devastating neurological disorder has no treatment or cure. It’s left this youngster with stiff joints, decreased hearing and eyesight and limited mobility. He walks using the aid of braces much of the time, or gets around by wheelchair. Should he live beyond the age of 8, it will most likely be in a vegetative state. Most with the condition don’t live beyond the age of 15.
He was diagnosed at the age of 2. Sanfilippo results from Lucas’ body being unable to process enzymes, which causes cellular waste to be stored in his tissues and organs instead. The condition affects 1 in 70,000. There are only four or five persons living in Tennessee who have Sanfilippo, the Hembrees said.
That first article on Lucas introduced Lucas and his service dog Juno to those in the community who hadn’t yet heard of the remarkable bond. Juno was rescued from an animal shelter in Upper East Tennessee, hours before she was scheduled to be euthanized. Chester trained Juno to always be at Lucas’ side in case he should fall or have other medical issues. That’s exactly where she’s been.
A day in his shoes
A day in the life of Lucas isn’t like most others. On Wednesday and Friday mornings he is visited by his home school teacher, who works on everything from singing songs to counting and recognizing colors. These sessions last 90 minutes.
Then on every other Wednesday, Jennifer and Lucas’ nurse, Nicole Livingston, load Lucas up for a ride in the van to participate in pool and land therapy, at Blount Memorial’s Total Rehabilitation Pediatric Clinic at Springbrook in Alcoa. These 30-minute sessions help Lucas maintain the strength and flexibility he has.
Martha Hunter is one of Lucas’ therapists who works with him on land and in the pool. She has done so for almost three years.
“We have seen some functional improvement with Lucas,” said explained. “We set goals for functional gain like jumping and we work with him on the balance beam. There are certain developmental skills that most children are supposed to reach and he has met many of them.”
Hunter explained that Lucas is able to do more in the water because there is less worry of him falling. The buoyancy of being in the water also allows him to move more freely about, while the resistance helps with his strength. The warmth of the water also means Lucas can stretch his muscles better.
Hunter has spent more time in the pool than on his land therapy because Jennifer and Chester have noticed Lucas’ endurance was going down. He was getting tired more easily, she said.
Work yet to do
The land therapy involves primarily balance work, the therapist said. Pulmonary functions are also increased by activities like blowing bubbles. Helping Lucas recognize obstacles in front of him and how to navigate around them without falling has been part of these therapy sessions as well.
Every Thursday, Lucas attends speech therapy with therapist Annette Lunneman, who is also at the pediatric rehabilitation center at Springbrook. She helps him communicate not only verbally, but also by using the computer and sign language. Mom said Lucas is able to talk with a verbal vocabulary of 10 to 15 words.
His occupational therapy sessions are also held on Thursdays. He works on motor skills and coordination, something his mom said deteriorates as Lucas ages. “We are just trying to keep him at current levels,” she said.
Then on Fridays, Lucas has school bright and early, at 8:15 a.m. then makes his way to pool therapy once again. Were it not for Livingston, Jennifer said life on the road with Lucas would be a whole lot tougher. Livingston is with the Hembrees for 50 hours a week, even going to appointments at Vanderbilt University Medical Center in Nashville. Lucas has an appointment there soon and also at Shriners Hospital.
Loving Lucas
“Ours is a love-hate relationship,” Livingston teased. She said she has to be firm with Lucas for safety reasons, but he can also make it difficult for her to be serious all of the time. “He tests me,” she said. “He has learned when I am playing and I’m not.”
Livingston knows firsthand the impact Lucas and Juno have had locally. She said they might be in a store or at Dollywood when someone recognizes them from the Facebook page. “People will walk right up and call him by name even though they’ve never met him,” she said.
Juno continues his devotion to Lucas. She has even alerted the Hembrees to things about to happen. Lucas suffers from seizures, and on two different occasions Juno has sensed them before they occurred. She’s an asset for which this family remains grateful.
Weekends are family time for the Hembrees. Tuesdays are left open in case Lucas should need to visit his doctors. And just recently, a huge Friday night activity was added to Lucas’ calendar — he’s playing tee ball on a special needs team at Eagleton. On his first night, he got a hit and Juno ran the bases with Lucas. So did dad and Lucas’ aunt, Christie Witt.
Jennifer and Chester know the facts about Lucas’ condition. That Sanfilippo is progressive, meaning it will get worse. They have met families who have lost children to the disorder. Their daughter could even be a carrier.
But this Alcoa family has surrounded Lucas with the best of care and people who love him unconditionally. They do what other families facing insurmountable odds do — all they can, every day.
- [S27] The Daily Times, http://www.thedailytimes.com/, (Blount County, Tennessee), 20 May 2012.
Here ... There ... Back again: Lucas’ family doing all it can to provide some sense of normalcy
By Melanie Tucker | (melt@thedailytimes.com)
As storm clouds promised a challenging road trip to Lexington, Ky. before daybreak on April 26, Lucas Hembree and his family from Alcoa loaded into a van operated by the Blount County Shrine Club for another opinion on Lucas’ progressive and fatal disorder.
Chester and Jennifer Hembree, Lucas, his service dog Juno and Lucas’ home nurse Nicole Livingston were on their way to Shriners Hospital where Lucas was making his first visit. The 5-year-old has a rare genetic condition called Sanfilippo syndrome, that has affected his muscles, how he walks, his hearing, his eyesight and his ability to speak. Doctors at Shriners wanted to examine Lucas to see if something could be done for his legs, which are almost always in braces because of the immobility caused by Sanfilippo. The type Lucas has, which is Sanfilippo syndrome MPS III-A is the most severe.
Two hundred miles up the road in Lexington and past the threatening weather, Lucas was checked in and a series of evaluations and exams were underway. For a child who had just endured a long and stormy van ride and was now being looked over by strangers, it was an exhaustive and frightening day.
A plan of action
Doctors at Shriners took a look at Lucas’ abnormal way of walking on his toes and recommended casts be placed on both legs to stretch the muscles and correct his walking. So late in the afternoon on April 26, that is exactly what they did. Purple casts up to his knees to be worn for three weeks. At the end of those three weeks, he and his family took another trip to Shriners to have those casts removed and new ones put on. That was done just this week.
Jennifer said these new casts will be taken off in three more weeks. “I’m not sure what will happen after that,” she said. “They are wanting to see if the casts have made a difference in the way he walks. We will have to wait and see.”
Wanda Rice is in charge of community relations for Shriners Hospitals for Children in Lexington. She said the hospital treats children ages newborn to age 18 for a host of orthopedic conditions. The hospital in Lexington has been there since 1926. She was the first one to greet Lucas and family on their first visit.
“We get to see some of these children literally grow up,” she said. They come in as small infants and have orthopedic conditions that require procedures over several years. Some of them even come back after their own children are born with problems treated at Shriners, she said.
The families who are treated here appreciate the fact that all procedures can be done under one roof, Rice pointed out. There is even a lab here that makes prosthetics, a nutritionist, x-ray capabilities, technically advanced motion lab, and a care coordinator assigned to each patient. “Once under the care of Shriners, everything can be taken care of right here,” Rice said. There is nowhere else the families have to go. That makes a huge difference to many families.”
She said this one hospital in Lexington sees over 10,000 patients. Most are treated as outpatients, but the hospital does provide inpatient care as well.
Following Lucas’ progress
Lots of folks in Blount County have come to know and recognize Lucas when he’s out and about. He has been the subject of two previous stories in The Daily Times (April 2 and April 16). He has a Facebook page that has received thousands of hits. His story has even hit the national media. Originally stories focused on the remarkable bond between Lucas and his service dog. Juno was a rescue from an East Tennessee shelter who was trained to help Lucas get around. Juno, as it turns out, can also sense when medical emergencies are about to arise. She’s never far from her best friend.
One of Lucas’ physical therapists was the one who recommended the Hembrees take Lucas to Shriners. The hospital in Lexington treats children with orthopedic conditions regardless of families’ ability to pay. The Blount County Shrine Club provided transportation and meals for this journey, just as they do for other Blount County families seeking treatment at area Shriners Hospitals.
Lucas was cooperative through the process of applying the casts. His mom said he has adjusted well, just like any child would. But playing tee ball with casts on his legs means Lucas must round the bases in his wheelchair, guided by family and constant companion Juno. Mom said this is one of the activities that puts sheer excitement on Lucas’ face.
“You should see him at the ball park,” she said. “His face lights up every time we pass a ball field. He thinks he is going to get to play. It’s been so much fun to watch him.”
Noticeable changes
But Jennifer, Chester and Livingston have all said they see changes in Lucas, and ones that aren’t giving them a good feeling. Jennifer and Livingston, who spend so much time with Lucas, said they have noticed declines in more than one area.
“His vocabulary is getting smaller,” Jennifer said. He was able at one point to verbalize about 10 to 15 words. “He is also getting more irritable,” his mom said. “He has more bad days than good.”
Symptoms of Sanfilippo include behavioral problems. Others are coarse facial features, full lips, heavy eyebrows, sleep difficulties, stiff joints and walking problems. Seizures are also likely, something Lucas has experienced.
The week of May 7, the Hembrees took Lucas to Children’s Hospital at Vanderbilt University Medical Center in Nashville, where both a geneticist and neurologist examined Lucas. Both agreed changes are taking place because of the Sanfilippo.
“Dr. Gregory Barnes, the neurologist, saw Lucas on Tuesday,” Jennifer said. “He confirmed there are some neurological changes going on. “He saw the geneticist, Dr. Tyler Reimschisel on Wednesday and he also said it looks like the disease is progressing.”
Lucas has been getting tired more easily and asks to go lie down, according to his mom. Where he used to be able to sit up in his wheelchair for a few hours, he now wants to rest after an hour.
The diagnosis of sanfilippo came when Lucas was just 2 and wasn’t hitting those benchmarks like a normal child his age. The Hembrees have been told this genetic disorder will, more than likely, leave Lucas in a vegetative state by the time he is 8. Most with Sanfilippo don’t survive beyond the age of 15.
The journey continues
Those who would like to learn more about the disorder can visit the website at http://www.mpssociety.org or follow Lucas on Facebook at praying for Lucas. The Hembrees have become strong voices in the community for awareness and the search for a cure. Their team T-shirts are purple and adorned with Prayers for Lucas in bold letters.
They are also working with various community members on fundraisers to help Lucas with his medical expenses. Right now, he needs a new wheelchair carrier for the van. The Hembrees do have insurance through Chester’s employment with the state, but it doesn’t cover the cost of the wheelchair carrier. An auction is currently underway to help with the cost. To participate, go to http://www.burninmemoriesonline.com . Information can also be found on Lucas’ Facebook page. Chester said all of the proceeds will go to Lucas’ medical fund. The auction ends on Tuesday.
There are plans in the works for another fundraiser with Addiction Motorsports and Brandon Miller, one of the local drivers.
The family continues to monitor Lucas’ condition and shares their concerns with Lucas’ caregivers. He recently got new hearing aids at the University of Tennessee Audiology and Speech Pathology Offices in Knoxville. New glasses may be needed soon. Jennifer said she just wants to give Lucas the best chance at a happy and comfortable life.
“My focus is doing my best to keep him at the level he’s at now,” she said. “I don’t want him losing ground.”
- [S27] The Daily Times, http://www.thedailytimes.com/, (Blount County, Tennessee), 18 Jun 2012.
Community support for Lucas evident in recent events
By Melanie Tucker | (melt@thedailytimes.com)
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.
- [S27] The Daily Times, http://www.thedailytimes.com/, (Blount County, Tennessee), 26 Jun 2012.
Dumplin’ Valley to hold benefit ride for Lucas
Dumplin’ Valley Raceway in Kodak will hold a benefit event Saturday, with gates opening at 4 p.m. and practice starting at 6 p.m. The race night will benefit Lucas Hembree, a 5-year-old Alcoa resident who has Sanfilippo syndrome, a rare and fatal genetic disorder. There will also be a silent auction and autographed Trevor Bayne collectibles. Prayers for Lucas T-shirts will be available for sale. For more information, visit http://www.thevalleyraceway.com
- [S27] The Daily Times, http://www.thedailytimes.com/, (Blount County, Tennessee), 27 Jul 2012.
Hembree family gets generous donation after thieves steal generator
By Melanie Tucker | (melt@thedailytimes.com)
A family whose generator was stolen overnight Wednesday in Alcoa has reason to be thankful today after a company donated one and delivered it on Friday.
The generator was extremely important to Chester and Jennifer Hembree, the parents of 5-year-old Lucas Hembree. Lucas suffers from a rare and fatal genetic disorder called Sanfilippo Syndrome and needs the generator in case the power goes out, to operate his feeding machine, oxygen monitor and other equipment.
Jennifer said the family noticed the generator was gone as they were loading Lucas into the van for therapy on Thursday morning. It had been bolted to the ground and covered. Thieves had to unbolt it and drag it across the yard because of its weight, Jennifer said.
She speculated the generator was stolen for its scrap value. The cord was left behind.
“It had been there almost a year,” she said. “It’s very heavy. Three or four people had to carry it and drag it through the yard.”
She said the family knows it was taken either Wednesday night or early Thursday because they had been out playing in the yard that evening and it was there. It was Lucas’ home nurse who made the discovery Thursday morning. She thought maybe Jennifer or Chester had moved the generator to another location.
Chester put up a sign in the yard after the generator was discovered missing, letting the thieves know they had stolen from a sick 5-year-old boy.
Lucas has been featured in several articles in The Daily Times and also the Knoxville media. When word got out about the theft, Certified Generator Service stepped in to help, giving the family a 9,000-watt generator to replace the 7,500-watt unit that was taken. Robert Burnett, owner of Certified Generator Service, said he was glad he could help.
Jennifer said it would have cost them at least $2,000 to replace the stolen item. She is grateful help came so quickly.
In addition, Phoenix Conversions in Knoxville also came to the family’s aid. The Hembrees had been saving money too buy a new wheelchair carrier for their van because the old one was wearing out. Phoenix Conversions came on Friday to provide the family a new one. Scott Hayse said his company also donated the labor to install it.
“It all happened so fast,” Jennifer said. She just wanted everyone to know how thankful they are for the new equipment for their son.
- [S58] Marriage Certificate.
Groom's Name Bride's First Name Bride's Maiden Name County Date of Marriage File #
HEMBREE CHESTER L JENNIFER L WITT BLOUNT 02-01-2003 02282
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Abt 2007 - (~ 17 years)
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