Category Archives: Patient Stories

Run to Inspire; Former TSRHC Patient with Cerebral Palsy Runs in Dallas Marathon

Every runner has his or her own reasons for running a marathon; many run to prove to themselves that they can simply do it. Others run to win.

For former TSRHC patient Michael Burns, he ran to inspire.

In an interview with WFAA ABC News Channel 8 in Dallas, Burns talked about his motivations for competing in the 2014 MetroPCS Dallas Marathon.

As a child Burns was diagnosed with cerebral palsy, and he spent 13 years as a patient of Texas Scottish Rite Hospital for Children under the care of Dr. J.A. “Tony” Herring, Chief of Staff Emeritus. TSRHC is the primary beneficiary of the Dallas Marathon, and to Burns’ it is the main reason why he participated.

“If I can give hope to other people, to other kids…that’s why I push.”

Burns began his journey as a marathon runner 7 years ago, when he took up running as a way to relieve stress brought on by the mortgage crisis. Now at age 36, this is his marathon.

“I was always curious about what it would feel like to do a half marathon, and then a half led to my full marathon, 26.2 mile race in one day,” Burns told WFAA Channel 8.

Burns is currently working with Dr. Lezlie Maloy of Spring Valley Spine and Sports care, who is helping him as he prepares to run. Burns has experienced several stress fractures running in the past, and Maloy is helping him with his biomechanics so that he can participate in the Dallas Marathon.

“I know what I have; I know that I’m very fortunate,” Burns said, “because I know with other patients with cerebral palsy, they’re not as fortunate; some are in wheelchairs, some are on crutches.”

TSRHC has been the primary beneficiary of the Dallas Marathon since 1997, receiving more than $3.5 million in donations.

“Everybody’s got their differences,” Dr. Herring said, “and what you do is make the best of what you’ve got. [Burns has] done a great job of doing that.”

2014 MetroPCS® Dallas Marathon Patient Champion Spotlight: Meet Max of Arlington

In addition to the junior race director, the MetroPCS® 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.

Max Paredes age 9 of Arlington_074

Max, age 9, of Arlington, Texas was adopted from China when he was three years old. When adopting Max, his family knew that he had some limb differences in both his foot and his hands, so it made sense for them to take him to TSRHC. Max is treated in both, TSRHC’s Prosthetics department as well as the Charles E. Seay, Jr. Hand Center. One of Max’s biggest passions is art. He has won artist of the year twice at Ditto Elementary School and he loves designing his legs! In addition, Max recently started playing soccer and is doing great. He is the epitome of perseverance, his parents never hear the words “I can’t do this” come out of his mouth because Max is always determined to find a way to do everything.  Max can’t wait to help cheer on the runners at this year’s Dallas Marathon!

2014 MetroPCS® Dallas Marathon Patient Champion Spotlight: Meet Ellie of Flower Mound

In addition to the junior race director, the MetroPCS® 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.

Ellie Sharp age 16 of Flower Mound_03Ellie, of Flower Mound, Texas has been a patient at Texas Scottish Rite Hospital for Children since she was 11 years old. She receives treatment at the hospital for scoliosis—curvature of the spine—and had surgery at TSRHC to correct the curve in July 2013. Thanks to TSRHC, today, her back is almost straight! Ellie is 16 years old and attends Flower Mound High School, where she is a vital member of the golf team. She is also a PGA Junior Tours participant, very active in her church and is a small group leader at Fellowship of Christian Athletes (FCA). Ellie has always had a positive outlook during her time as a patient at TSRHC. All of the trips to the hospital became mother/daughter days for her and her mom.

Ellie is extremely outgoing and loves to talk and make new friends. She hopes to attend Ole Miss in the future and pursue a degree and career in marketing or public relations. Ellie has loved every experience she has had at TSRHC, especially the volunteers and the popcorn, and is excited to represent the hospital as a 2014 Patient Champion!

Violeta’s Story: From the White House to TSRHC

Violeta Hernandez_16

With Don Cummings, Director of Prosthetics

Violeta visited the White House in 2004. That year, she also became a patient at TSRHC, referred to the hospital by George W. Bush’s secretary of education, Rod Paige, who had met the 8-year-old Violeta during an official trip to Mexico two years earlier.

Violeta was born without a right leg and had a poorly functioning prosthetic. She came to TSRHC to be fitted for a new prosthetic and began making annual visits for adjustments or new legs as she grew. Now 20, Violeta is a scholarship college student back home. Recently she had her last TSRHC appointment, documented in this video, Violeta’s Story.

2014 MetroPCS® Dallas Marathon Patient Champion Spotlight: Meet Elizabeth, age 11, of Arlington

In addition to the junior race director, the MetroPCS® 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.

Elizabeth Spoon age 11 of Arlington_34Elizabeth, age 11, of Arlington, Texas has been a patient at TSRHC’s Luke Waites Center for Dyslexia and Learning Disorders for a year and a half. Elizabeth had been homeschooled and her mom knew that something was wrong, so the pediatrician sent them to TSRHC. After going through testing, she was diagnosed with dyslexia and, with much excitement, was soon admitted to The Luke Waites Center.The Luke Waites Center for Dyslexia and Learning Disorders is named for Dr. Luke Waites, who in 1965 established a program at TSRHC to identify and treat children with learning disorders, primarily dyslexia. The World Federation of Neurology met at TSRHC in 1968 and formulated the first consensus definition of developmental dyslexia. With great progress in the dyslexia program at the hospital, Elizabeth’s parents now have to tell her to put her books away at night or else she will never go to bed! Outside of school, Elizabeth is an accomplished hockey player. Her future goals are to attend Yale University, because they have a great hockey team and an outstanding dyslexia center. Elizabeth is looking forward to representing the hospital as a Patient Champion at the 2014 Dallas Marathon!

Elizabeth was featured in the Dallas Morning News on Tuesday, November 25. Read article online here!

Opening Doors: Emily Ramirez’s Story

The school bell rings at Abilene High School and it is time to go to class.

Hundreds of students pour through the front entrance of the building with ease, opening and entering through the doors without thinking twice. But one student remains behind, struggling to open the door with her walker in the way.

After a few minutes of effort, she eventually opens the door and makes her way to class in the wake of her peers. This student is 17-year-old TSRHC patient Emily, and this was how she started her day, every day, for years.

“I’ve struggled through anything you could think of my entire life,” says Emily, who was born with cerebral palsy, a disorder that affects muscle tone, movement and motor skills. “I always had to have someone help me – including opening doors – just to get into school.”

While public buildings, including schools, must provide entrances that are wide enough to accommodate a wheelchair or walker, there is no law that requires the installation of automatic handicap doors. Emily looked beyond the law and saw a need.

Last summer, Emily took a stand against the struggle for accessibility for both herself and other students in her shoes. So she launched a campaign to install automatic doors at her school. Little did she know, her efforts would grow into a movement that would take Abilene, Texas, by storm.

Emily decided to name the campaign “Keep Calm Install Handicap Doors.” The phrase and logo was emblazoned on T-shirts, which were sold to raise funds for the cause. Local media, from television to radio stations, shared her story. Billboards and fliers were produced and displayed across town. Eventually the mayor of Abilene became involved, and even proclaimed a day in Emily’s honor to recognize her hard work and success.

“The whole community stepped forward when we began the campaign,” says Emily’s mother, Kimberly. “It was just overwhelming. It went beyond anything we had ever imagined.”

Emily’s initial goal was to have one electronic door installed at her school. But after a story about the campaign was featured on a local news station, several people wanted to lend their support. The original story aired on a Friday night. By the following Monday morning, four doors had been donated to the cause.

“We had no idea the campaign was going to explode, but it did. And it opened everybody’s eyes,” says Kimberly.

To date, the campaign has successfully led to the installation of 15 electronic doors across six Abilene school campuses. But to Emily, the true success of the campaign has been its positive effect on her fellow classmates. “I had to do this not only for me, but for everybody else that needs it. Seeing the reactions on the faces of students using the doors for the first time made me so happy,” says Emily. “We all have a new level of independence. It has been such a freeing feeling.” Emily’s display of determination reaches beyond Abilene and has inspired even her TSRHC doctor, Mauricio Delgado, M.D.

“Emily is a very smart young woman who does not let her mobility challenges stand in her way,” says Delgado. “Knowing that she is working so hard to help other kids like herself is extremely encouraging.”

Delgado is the director of TSRHC’s Neurology department, which provides care for orthopaedic patients who have related neurological disorders, including cerebral palsy. It is the most common physical disability in children, affecting approximately four out of every 1,000 school-aged children.

“Through medical and surgical treatments, along with assistive devices and therapy, TSRHC serves this patient population in a variety of ways,” says Delgado. “We
aim to maximize their functional potential so they can improve their participation in day-to-day activities.”

Emily’s experience at TSRHC helped build a foundation for the skills needed to create a successful campaign. “With the support of the hospital and the treatment I’ve received here, I have been given a sense of security and peace,” says Emily. “The care from Scottish Rite gives me the confidence I need to speak up for what I believe in.”

Emily’s confidence to stand up for what she believes in continues to grow – and she continues to open doors to a brighter future for herself and others.

***This article was featured as the cover story for our 2014 Volume 2 Rite Up Magazine

TSRHC Patients Give Back – Summer 2014

At TSRHC, we are very lucky to have generous friends that support the hospital’s mission to treat patients regardless of the family’s ability to pay. But what is truly special is when these generous friends happen to be patients. Here are three recent and unique stories about our patients giving back to TSRHC!

Crawfish for the Curve

Rowan Fitzsimmons - ptTSRHC patient Rowan, age 8 of Dallas, and her family held their second annual crawfish boil, Crawfish for the Curve, at their house in Dallas this spring. The proceeds were used to buy three mini iPads for the hospital and the rest of the money was donated to TSRHC as well. The event has raised $7,700 over the past two years!

Bootin’ Out Cerebral Palsy 5K Walk / Barrel Race

LEE_0207ACandy Schulz and her three children, a TSRHC patient family, organized and held the second annual Bootin’ Out Cerebral Palsy 5K Walk in Alvarado, Texas on Saturday, March 29. The 5K Walk commenced from the Town Square in Alvarado.

This year, a second event was hosted by the Schulz family, a barrel racing contest on May 17. Combined, the events raised $10,000 for TSRHC! The proceeds from both events were used to help underwrite the 2014 Farm & Ranch Day event held for our patient families and friends at Reverchon Park on Saturday, May 17.

Addison’s Birthday Wish

LEE_1072ATSRHC patient Addison, age 7 of Rockwall, made a special birthday wish to raise money for the hospital that has treated her since she was just 5 days old. Her initial goal was to reach $1,000, but after she received an overwhelming response on her first day she decided to increase her goal to $4,000! Addison and her family came to TSRHC on July 31 to donate the $4,200 that Addison raised through sharing her “Birthday Wish” sign in her neighborhood.

Thank you to all of these inspiring kids and to all of the friends that support TSRHC!

Courtney’s Story – Life After Scoliosis Surgery

courtney scoliosis basketball 3Finding out you have scoliosis is scary, and for fifth grader Courtney Walker, it was no different. Born with a competitive nature, she had many aspirations to play sports in school, particularly basketball. Each of her sisters grew taller than her mother, and she had the same goal. Finding out she had a curve in her spine only temporarily dashed her dreams.

Starting the Journey

courtney scoliosis basketball 2Once her family found Texas Scottish Rite Hospital for Children, they immediately got to work to set her spine straight. Naturally, her parents were very worried about her and thought that she might never walk again. However, Courtney was more optimistic. She never felt that anything was wrong with her before her diagnosis, and she was positive she would recover after the surgery.

Surgery and Road to Recovery

courtney scoliosis basketballThe surgeons at TSRHC placed rods in Courtney’s spine and screwed them into place. This corrected the curve in her back and she woke up from her scoliosis surgery with a smile on her face. She immediately began to recover and jumped back into her favorite sports. Two years later, she is practicing gymnastics, and can even do a back handspring by herself.

At TSRHC, Courtney had doctors and surgeons that believed in her, and that faith and hope allowed her to persevere until she accomplished every goal she had set for herself before her diagnosis. As Courtney reached the end of eighth grade, she accomplished the goal of growing taller than her mother – and her mom couldn’t be more proud.

Learn more about Courtney through her YouTube Video:

Two TSRHC Patients Win Prestigious Tommy Tranchin Award

This year’s winners of the Tommy Tranchin award have been announced, and we’re proud to report that two out of the six recipients are TSRHC patients.

The two winners, Alexander Milner and Drew Walton, are young men who embody the heart and spirit of the award—neither one lets a disability get in the way of achieving their dreams.

The Tommy Tranchin Award, sponsored by the Dallas Foundation, was established by Laurie and Rob Tranchin to continue the legacy of their son, Tommy, whose hearing disability didn’t stop him from pursuing a passion for music. The award gives recipients the opportunity to follow their dreams by granting them a stipend (up to $1,500) to be used toward a proposed activity for which they have a passion.

For Alexander Milner, his dream is to one day compete in the Olympics. At age 3, Alexander was WAT_3922stricken with polio, which caused paralysis in his left leg. He initially began learning gymnastics as a form of physical therapy, but he quickly developed a love for the sport.

Alexander is now one of the top gymnasts in the state of Texas and hopes to take his passion all the way to the Olympics. With help from the Tommy Tranchin Award, Alexander will be able to travel to a prestigious gymnastics competition.

Drew Walton has cerebral palsy. When he was an infant, a pediatrician told Drew’s mother that heDrew Walton Tommy Tranchin Award would never learn to walk or talk. As a patient at TSRHC, Drew has exceeded everyone’s expectations—earning straight A’s at Waxahachie High School, where he also manages the track and football teams.

Drew applied for the Tommy Tranchin Award, with help from his teacher, Mr. Galliger. As an award recipient, Drew will receive Dragon software, a laptop computer, printer and microphone, which will give him the ability to further his studies.

Competition for the Tommy Tranchin Award was extremely strong this year, and we’re proud that two of our patients were able to show the determination, commitment and perseverance necessary to win. The TSRHC staff congratulates Alexander and Drew on this tremendous achievement.

Emily’s Story – Chapter Two

5Patients with scoliosis are treated at Texas Scottish Rite Hospital for Children all the time, but TSRHC patient Emily’s case is different. Her scoliosis was already extreme at a very young age, forcing her to make TSHRC like a second home. She became well known around the hospital for her happy spirit and you may remember seeing our very popular first video of her! Now eight years later– we catch up with her to see how she’s doing.

12

Since her final scoliosis surgery fused permanent rods to her spine, Emily hasn’t had any problems with her scoliosis. She continues to return to the hospital occasionally for checkups, but her doctor, Dr. Rathjen, has cleared her to participate in some of her favorite activities including: fishing, horseback riding and golfing.

Emily Spaulding age 12 of_ Midland_22Participating in Studies

Emily returns to the hospital periodically for testing in order to help doctors researching early onset scoliosis. Currently, there is no explanation for why she was born with a 55 degree curve in her spine because no one else in her family has had scoliosis. However, the good news is that the doctors have concluded that she will not pass it down to her own kids.

Growing Up Fast

After having 33 surgeries over the course of ten years, Emily had no other choice than to grow up fast.

Watch Emily’s Story – Chapter Two, to catch up with the Midland 13-year-old and hear more about her experience at TSRHC!