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Dallas Marathon Patient Champion Spotlight: Briana, age 18, of Wylie

In addition to the junior race director, the Dallas Marathon features 5 patient champions from  TSRHC. The patient champion program is a way for the community to participate in race-weekend activities and fundraise on behalf of a patient.

Briana, age 18, of Wylie, Texas, began treatment at TSRHC for hip dysplasia in September 2012. Hip dysplasia is a medical term that represents a wide spectrum of hip conditions ranging from complete dislocation of the ball from the socket to a misshapen socket in which the ball is not properly in place. After some careful consideration, the doctors at TSRHC decided that they would need to operate on Briana in order for her condition to improve. After her surgery, Briana enjoyed her stay at TSRHC and appreciated the friendly and respectful staff.  She was geatful for the approach the doctors too to make sure she felt comfortable and understood what she would be experiencing.

Briana Russell age 18 of Plano_10

In her free time, Briana enjoys reading and horseback riding, but her biggest dream is to become a U.S. Marshall. She is thankful to TSRHC for her hip procedure so that she can be active and pursue her dreams.

Read more about Briana and ways for you to get involved in the Dallas Marathon at www.dallasmarathon.com.

Dallas Marathon Patient Champion Spotlight: Alfonso, age 11, of Bedford

In addition to the junior race director, the Dallas Marathon features 5 patient champions from  TSRHC. The patient champion program is a way for the community to participate in race-weekend activities and fundraise on behalf of a patient.

Meet Alfonso, age 11, of Bedford, Texas. Alfonso has never shied away from a crowd. He loves to sing, act and entertain, but when it comes to being a patient at TSRHC, there’s no “pretending” about his genuine love of the hospital. Alfonso has been treated for both hand differences and prosthetic needs at the hospital since 2007 under the care of TSRHC’s Chief of Staff Emeritus Tony Herring, M.D., and TSRHC’s renowned Prosthetics department.

Alfonso Apodaca_02

Alfonso loves the caring medical staff at TSRHC and his attentive prosthetists, who provide comprehensive prosthetic services and on-site custom fabrication for patients with amputations or limb deficiencies. His prosthetist, Kara Davis, describes him as a “very fun-loving, active kid” and his adventurous spirit is infectious to all who meet him. Thanks to TSRHC, Alfonso is not going to let his differences keep him out of the spotlight. This aspiring actor is pursuing his dreams of the bright lights with the help of his loyal fans at TSRHC.

Read more about Alfonso and ways for you to get involved in the Dallas Marathon at www.dallasmarathon.com.

Meet Dallas Marathon’s Junior Race Director – TSRHC Patient Ann-Elise

The one month countdown to the Dallas Marathon has begun! Each year, a TSRHC patient serves as the Junior Race Director, representing the thousands of children treated at the hospital each year. In this role, the Junior Race Director helps participants and sponsors understand how TSRHC benefits from the support of friends like the marathon. We are so excited to introduce you to our 2013 Junior Race Director, Ann-Elise!

Ann-Elise Mitcham_24

At first glance it is difficult to distinguish Ann-Elise, age 12, of North Richland Hills, from any other eighth grader in her class.  She enjoys riding her bike, playing tennis, reading adventure books and spending time with her friends. However, Ann-Elise spends 18 hours of each day in a back brace that goes virtually undetected by her peers.  She was recently diagnosed with scoliosis and as a result, she must wear a back brace, or orthosis, in an effort to stop the curvature from continuing.

Scoliosis is a progressive condition causing the spine to curve or twist into a “C” or “S” shape. It appears most often in adolescent girls (usually between the ages of 10-15) and has shown a tendency to run in families. Ranked by US News & World Report as the 2013 No. 1 Pediatric Orthopaedic program in the country, Texas Scottish Rite Hospital for Children (TSRHC) provides the highest quality care for patients like Ann-Elise and the 5,000 others who are treated for scoliosis each year.

In addition to frequent appointments with her doctors at TSRHC, Ann-Elise is also seen by the hospital’s Orthotics department, where she is fitted for a customized brace to help correct her scoliosis curve. TSRHC’s skilled orthotists carefully customize each brace to a patient’s specific needs and create the braces onsite at the hospital. The Orthotics department ensures that each device is not only comfortable for the patient to wear each day, but that it reflects each patient’s personality with custom designs, colors and artwork.

When asked what she likes most about TSRHC, Ann-Elise says she loves the friendly environment and staff. She was amazed by how much the staff at TSRHC listened to her concerns and took the time to know her personally, beyond the details surrounding her medical condition.

Ann-Elise is honored and excited to be the 2013 Junior Race Director for the metroPCS Dallas Marathon. “I can’t wait to cheer on the runners, especially my aunt and uncle,” she says. “They have always been so supportive of me.”

Ann-Elise is an excellent representation of the thousands of patients that are treated at TSRHC every year. With the help of the hospital she has no limits on what she can accomplish.

For more information about registering and volunteering for this year’s marathon visit:
www.dallasmarathon.com.

The Girl with the Zebra Leg – A TSRHC Patient Story

Staff Tony Herring; former patient Patience Beard

Patience with TSRHC Chief of Staff Emeritus Dr. Tony Herring

As soon as Patience Beard was born, her parents knew she was special. They told her growing up that God had made her just the way she was supposed to be made, and that she could do anything – despite the fact that she had been born with proximal focal femoral deficiency, a rare birth defect that prohibited growth in one of her legs.

At the age of eight months old, it came time for her parents to make a decision: should they attempt multiple surgeries throughout her life in order to recover her leg or should they amputate it? Years later, Patience is grateful to her parents for the difficult decision they made to go to Texas Scottish Rite Hospital for Children to have her leg amputated.

Once she reached seventh grade, she was comfortable enough using her prosthetic leg to try out for the cheerleading squad with the rest of her friends. It became her passion, and she was one of the best on the squad. There was nothing her prosthetic leg could keep her from doing.

As college soon approached, she decided she wanted to continue her love of cheerleading and audition for the University of Arkansas cheering squad. They told her beforehand that there would be no exceptions made and that if she could not perform as well as the other cheerleaders, she would not be chosen. She was accepted on the squad and felt proud knowing that despite her amputation, she was able to perform just as well as the others that auditioned.

Watch Patience’s inspiring story and learn more about the exceptional work done in TSRHC’s Prosthetics Department at www.tsrhc.org/prosthetics.

TSRHC Featured in The New York Times for Scoliosis Bracing Study

scoliosis braceTSRHC’s young patients are accustomed to receiving top-flight, technologically-based treatment for a variety of conditions, but a recent study examining the effectiveness of back braces to correct scoliosis proves that sometimes, old school methods still produce the most desirable outcome.

The randomized study, which was published Thursday in the New England Journal of Medicine, provided verifiable proof that the 50-year-old practice of bracing children with scoliosis brings significant pain relief, and helps young people avoid delicate surgery to correct the condition.

The practice of using braces was brought into question several years ago after the United States Preventive Services Task Force recommended discontinuing scoliosis screening in schools because of insufficient evidence that bracing helped children.

A Difficult Condition to Treat

Scoliosis is a progressive condition that causes the spine to curve from side to side. The curve typically is three-dimensional, and is shaped like a “C” or an “S.” It’s caused by congenital vertebral anomalies, and in some cases, is idiopathic.

Outside of bracing, common treatments include spinal fusion surgery in which physicians place screws in the spine to straighten it out. Although scoliosis surgery produces excellent results, patients face all of the inherent risks of undergoing surgery.

The Proof Physicians are Looking For

The study analyzed data on 242 patients at 25 sites in the United States and Canada. Patients were 10 to 15 years old, and all had spinal curvature of 20 to 40 degrees. The analysis indicates that among the children that wore a brace 18 hours a day, 72 percent were successfully treated, versus 48 percent that were observed without a brace.

Additionally, researchers noted that the longer a teen wore the brace, the more successful treatment was. More than 90 percent of young people who realized the best outcomes from bracing wore the device more than 13 hours per day.

However, bracing was deemed a failure if a child’s curvature progressed to 50 percent or more, which is the point at which surgery becomes imperative.

Dr. B. Stephens Richards, Chief Medical Officer at TSRHC, told the New York Times that evidence cited in the study was “very convincing.”

“It scientifically proves that brace treatment works for adolescents with scoliosis who are at risk of curve worsening to the point of needing surgery,” he said.

Read the full article at the New York Times…

TSRHC Hand Disorder Patient, Charlsie Serves as Ambassador

When someone is facing a serious medical condition, attitude is everything.

Charlsie, an intelligent and engaging 12-year old with an inquisitive smile, not only exemplifies how a positive attitude can help one transcend a physical challenge, she’s a powerful testament to how sharing a personal story helps others.

As a TSRHC ambassador, Charlsie shares how her treatment for symbrachydactyly, a congenital condition marked by missing bones in the fingers and hands, has affected her life at several public events, corporate gatherings and charity outings. The youngster’s speaking schedule, to look at it on paper, rivals that of a corporate executive.

Charlsie Doan

A Little Background on Charlsie

Charlsie, who was born without a right hand, began her journey at TSRHC when she was six months old. Not having a hand might be a situation that would get most children down, but not Charlsie:  she’s a violinist, she enjoys sports, and has an active social life. She was treated at TSHRC’s world-renowned prosthetics department where, according to her mother Kelly, she became great friends with the staff.

Symbrachydactyly is an extraordinarily rare condition that affects about one in every 30,000 births. Its root causes are unknown, though current research indicates that it may be caused by an interruption of the blood supply to the affected limb prior to birth. Treating symbrachydactyly includes using adaptive prosthetics that enable a person to participate in daily life. The prognosis for a person with the condition, as long as they have proper supports, is excellent.

What She’s Doing Now…

Most recently, Charlsie represented the TSRHC prosthetics team at a presentation to the Crystal Charity Ball Selection Committee. The ball is an event that benefits children’s charities throughout the Dallas community.

She’s also a regular at the KidSwing Golf Tournament, one of the hospital’s largest fundraisers. Charlsie also serves on the KidSwing Junior Committee.

For Charlsie, and so many other children facing medical complications or life-threatening illnesses, TSRHC is the place that makes typical childhood activities like violin lessons possible. Her willingness to share her experiences is a powerful example to other children undergoing treatment that, if Charlsie was able to thrive in the face of her diagnosis, maybe they can, too.

In Memoriam: Former TSRHC Chairman of the Board of Trustees Jack Hightower

 

photo_221600_5712004_1_5712004d.0_20130806Former TSRHC Chairman of the Board of Trustees Jack Hightower died in Austin, Texas, on Aug. 3 at the age of 86. Hightower served in the Texas House of Representatives, Texas Senate and U.S. House of Representatives, as well as a District Attorney, First Assistant Attorney General of Texas and on the Texas State Supreme Court. His commitment to service expanded to his Masonic roles, where he served as the Grand Master of the Most Worshipful Grand Lodge of Texas in 1972 and later as the Sovereign Grand Inspector General. Hightower was elected to the hospital’s board in 1991 and served on it until his death. Hightower and his wife, Colleen, were highly devoted to TSRHC, which inspired the hospital to name the TSRHC Children’s Theater in their honor.

For more information about Jack Hightower, view his obituary

7-Year-Old Emily of Emily’s Monkeys Sells 720 Doughnuts, Raises $2,120 for TSRHC in 2 Days

Even though she’s just seven years old, little Emily felt the need to thank Texas Scottish Rite Hospital for Children in a big way.

Before we talk in more detail about the inspiring feat this child accomplished, it’s important to know a little about Emily’s background.   Emily suffers from a condition called juvenile dermatomyositis (JDM), a condition so rare that it affects just 3 in 1 million children.

What is Juvenile Dermatomyositis (JDM)?  

JDM is an autoimmune dysfunction that manifests itself in children, primarily in females.  The body’s immune system turns against itself, attacking its blood vessels.  This rare condition causes some or all of the following complications:

  • Muscle weakness
  • Inflammation in muscles
  • A distinctive red rash on the face, eyelids, hands and many of the major joints
  • Calcium deposits under the skin

The condition also results in fatigue, poor coordination, and when it becomes particularly severe, simple tasks like walking up stairs or lifting light objects become painfully difficult for the affected individual.

Unfortunately, doctors still aren’t entirely sure what causes the condition, although popular belief holds genetics responsible.  Because the condition is so rare, it often gets misdiagnosed for other muscle diseases like muscular dystrophy.

Emily Overcomes all Odds

Despite the rare nature of this condition, Emily eventually found her way to TSRHC’s pediatric rheumatology clinic, where she receives treatment.

Because of this special treatment, Emily wanted to extend her thanks, but wasn’t quite sure how. Eventually she and her family founded Emily’s Monkeys. With the help of friends and volunteers they have been making sock monkeys to give to children currently awaiting surgery and holding other fundraisers to raise money for TSRHC.

Emilys Monkeys TSRHC

Last month, Emily’s father Josh suggested asking her favorite donut shop, The Hole Thing in Forney, Texas, if they would be willing to co-host a fundraiser.  Without any hesitation, The Hole Thing wholeheartedly agreed. Both agreed to make 720 monkey-shaped donuts, flavored with chocolate and banana.

All 720 donuts lasted just 48 hours.  $2,120 was raised, and The Hole Thing opted to match the funds.  A check totaling $4,239 was delivered to TSRHC during one of Emily’s Monkeys popular sock monkey making parties on Saturday, June 8 at the old firehouse in downtown Forney.

Great work Emily, and thank you for your efforts!

TSRHC Undertakes New Research to Determine Quality of Prosthetics for Children

Many military veterans who have suffered amputations are subjected to the CHAMP (Comprehensive High-Level Activity Mobility Predictor).  This test is a performance-based measure of the functional ability of veterans affected by limb loss.  Ultimately, the result of the test helps determine what treatment the supervising physician prescribes.

While the test works well for veterans, there isn’t a similar test available for children who may be missing one or more limbs.

This makes it difficult for our doctors to know the best treatment approach for children in need of prosthetic devices.  Because of our commitment to providing the best healthcare possible, we looked into finding something to help make that possible.

TSRHC Is Working Hard on Finding a Solution

Every summer, at Texas Scottish Rite Hospital for Children, we do all we can to help children who are in need of prosthetics to find a realistic and applicable measure.  During select Dallas Zoo Summer Camp programs, campers, ranging from Kindergarten to 8th grade, , are invited to help our researchers in identifying an appropriate method for identifying treatment.

All campers have the opportunity to participate in working their way through an agility course while standing on one leg, moving from side-to-side, running a shuttle run by weaving through cones, and then running forward, side-stepping, and running backwards.  TSRHC staff times the children as they perform these activities.

How Will the Collected Data Be Used?

Although no personally identifiable information about the children is shared, parents can have their children opt out of providing personal information if they choose..  All children are allowed to participate, and data is collected about their height, weight, waist circumference, and how long it takes them to run the course.

The data collected is used to provide a baseline of healthy scoring ranges for children without pediatric orthopedic conditions, which is critical for developing the most effective treatment approaches for children who do need prosthetic devices.

TSRHC Releases Groundbreaking Bone Deformity Correction Device TL-HEX

Do you remember the stories of how computers used to fill up an entire room?  Then, by the mid-1990s, almost every private citizen and business owned a personal computer.  Towards the end of the 1990s, everyone had an internet connection.  By the mid-2000s, every college student owned a laptop.  Now, in 2013, tablet PCs, which possess exponentially more power than computers of old and are just a fraction of the size, are commonplace across the globe.

This story illustrates a basic point:  advances in technology seem slow, but over time, their changes accumulate, creating a big difference in the world.

Similar changes happen in the realm of medical technology.  At Texas Scottish Rite Hospital for Children, our medical doctors and biomechanics professionals have been working vigorously to develop a more effective method for correcting bone deformities.  And, at long last, we’ve made another breakthrough, making bone deformities, malformations, fractures and lengthening easier to treat than ever before.

The Current Leading Bone Deformity Correction Device:  TRUE/LOK

In 1993, TSRHC developed the TRUE/LOK® External Fixation System, a four-strut system used to correct bone deformities and lengthen limbs.  For the past 20 years, it’s been the simplest, most stable, and highly versatile system for correcting a number of bone fractures, nonunions, malunions, and other deformities.

By offering a system of pre-assembled hinges, angular distractors, and other easy-to-manipulate components, the TRUE-LOK® External Fixation System has set the standard for correcting bone deformities in hospitals around the world.

The TL-HEX Brings More Stability and Flexibility

TL-HEX However, as with many things, a good thing often leads to an even better thing. Although TRUE/LOK continues to help kids around the world, a new beginning provided by the TL-HEX offers a much more flexible and stable solution.

David Ross, director of TSRHC Bioengineering and Biomechanics, Mikhail Samchukov, M.D.* and co-director of the TSRHC Center for Excellence in Limb Lengthening and Reconstruction, and Alex Cherkashin, M.D.**, a division director at the center, collaborated to create a device even more effective than the TRUE/LOK.

TL-HEX  fittingAlthough the TL-HEX visually appears quite similar to the TRUE/LOK, it uses six struts, a lightweight aluminum frame, and sophisticated software technology to correct bone deformities.

“Using six struts allows us the capability to lengthen, to rotate and to compress the bone – all at once,” said Samchukov.

Through a system of circular and semi-circular supports, the TL-HEX affixes a patient’s bones by wires and half pins, which are connected by the six struts.  This allows both rapid and gradual ring position, enabling the practicing physician to reposition bone segments with incredible precision and control.

The TL-HEX also maintains full compatibility with the TRUE/LOK system.

A Large Differentiator Between TRUE/LOK and TL-HEX:  Software

One of the greatest differences between the TRUE/LOK and TL-HEX is the software support that comes along with the TL-HEX.  This software shows physicians how to make the following types of precision adjustments:

  • Distraction
  • Angulation
  • Translation
  • Rotation

The device has already been launched internationally, with South Africa playing host to the first surgery taking advantage of the TL-HEX.  Throughout the next year, the device will be launched in several additional international markets.

*Medical degree from Khabarovsk State Medical School, Russia.
**Medical degree from Novosibirsk State Medical School, Russia.