Category Archives: Patient Stories

Amputee Ski Trip Spotlight: Ryan, age 15 of Rockwall, Texas

IMG_9360Ryan, age 15 of Rockwall, Texas, has been at Texas Scottish Rite Hospital for Children (TSRHC) his entire life. Ryan was born with bone missing in his right leg and as a result, his leg did not fully form. With a positive and playful attitude, Ryan tells anyone who asks that a shark bit off his leg. Ryan is a normal teenager who likes hanging out with his girlfriend and playing on his phone. This is Ryan’s first time on the Amputee Ski Trip. He is excited to learn how to ski and snowboard.

About TSRHC’s Ski Trip:
Since 1981, Texas Scottish Rite Hospital for Children has hosted an Annual Amputee Ski Trip for patients. Fourteen teenage patients, as well as medical staff and chaperones, spend a week at the National Sports Center for the Disabled (NSCD), in Winter Park, Colorado.

In a continuing effort to improve the lives of patients, Texas Scottish Rite Hospital for Children recognized that snow skiing is well suited for amputees, and with special equipment, they quickly become competitive and often excel at the sport.

Skiing at the renowned National Sports Center for the Disabled creates a focus for the trip, but the personal growth and challenges the teens overcome are often more life-changing than the actual accomplishment of skiing. The goal of the trip is to foster a sense of self-confidence, discovery and independence for these teens.

Since the first Amputee Ski Trip in 1981, the community has teamed up with the hospital to make this opportunity possible to patient families. American Airlines has sponsored the trip since 2005. Prior to that, Delta Airlines supported the event for more than 20 years. Multiple other generous supporters from the community, including the Stephen M. Seay Foundation help make this trip possible!

Amputee Ski Trip Spotlight: Marilou, age 16 of Laredo

Marilou, age 16 of Laredo, Texas, has been a patient at Texas Scottish Rite photoHospital for Children (TSRHC) for almost as long as she can remember. She was born with limb differences in her legs, which led to her need for prosthetics. When Marilou is not playing music in the band at her high school, she loves to write and do makeup. She plans to go to school in California and eventually get her masters degree in literature, which will hopefully lead her to a career as a successful author. Going on the ski trip with TSRHC has been a dream of Marilou’s since she started coming to the hospital. She is excited to finally get to go to Colorado and experience skiing for the first time.

About TSRHC’s Ski Trip:
Since 1981, Texas Scottish Rite Hospital for Children has hosted an Annual Amputee Ski Trip for patients. Fourteen teenage patients, as well as medical staff and chaperones, spend a week at the National Sports Center for the Disabled (NSCD), in Winter Park, Colorado.

In a continuing effort to improve the lives of patients, Texas Scottish Rite Hospital for Children recognized that snow skiing is well suited for amputees, and with special equipment, they quickly become competitive and often excel at the sport.

Skiing at the renowned National Sports Center for the Disabled creates a focus for the trip, but the personal growth and challenges the teens overcome are often more life-changing than the actual accomplishment of skiing. The goal of the trip is to foster a sense of self-confidence, discovery and independence for these teens.

Since the first Amputee Ski Trip in 1981, the community has teamed up with the hospital to make this opportunity possible to patient families. American Airlines has sponsored the trip since 2005. Prior to that, Delta Airlines supported the event for more than 20 years. Multiple other generous supporters from the community, including the Stephen M. Seay Foundation help make this trip possible!

Amputee Ski Trip Spotlight: Josiah, age 16 of Dallas

IMG_3020Josiah, age 16 of Dallas, Texas, has been a patient at Texas Scottish Rite Hospital for Children (TSRHC) since he was two years old. Leg length discrepancy first brought Josiah to Scottish Rite Hospital, but in 2012 he had an amputation and has since moved exclusively to the TSRHC prosthetics department. Josiah is a lover of the outdoors. He collects knives and he likes to hunt and to be out in nature. This is Josiah’s first time on the Amputee Ski Trip. He is extremely excited to take in the whole experience and to be in the clean, crisp mountain air.

About TSRHC’s Ski Trip:
Since 1981, Texas Scottish Rite Hospital for Children has hosted an Annual Amputee Ski Trip for patients. Fourteen teenage patients, as well as medical staff and chaperones, spend a week at the National Sports Center for the Disabled (NSCD), in Winter Park, Colorado.

In a continuing effort to improve the lives of patients, Texas Scottish Rite Hospital for Children recognized that snow skiing is well suited for amputees, and with special equipment, they quickly become competitive and often excel at the sport.

Skiing at the renowned National Sports Center for the Disabled creates a focus for the trip, but the personal growth and challenges the teens overcome are often more life-changing than the actual accomplishment of skiing. The goal of the trip is to foster a sense of self-confidence, discovery and independence for these teens.

Since the first Amputee Ski Trip in 1981, the community has teamed up with the hospital to make this opportunity possible to patient families. American Airlines has sponsored the trip since 2005. Prior to that, Delta Airlines supported the event for more than 20 years. Multiple other generous supporters from the community, including the Stephen M. Seay Foundation, help make this trip possible!

Amputee Ski Trip Spotlight: Jazmyn, age 16 of Irving, Texas

Jazmyn PolkJazmyn, age 16 of Irving, Texas, has been treated at Texas Scottish Rite Hospital for Children (TSRHC) since 2013. Due to the development of Osteosarcoma in her bones, she now wears a full leg prosthesis. This will be Jazmyn’s first year going on the TSRHC ski trip and she is very excited to have this opportunity to attend. Jazmyn loves hanging out with her friends and going to the mall and watching movies in her spare time. Her future plans are to pursue something in the medical field, specifically in oncology.

About TSRHC’s Ski Trip:

Since 1981, Texas Scottish Rite Hospital for Children has hosted an Annual Amputee Ski Trip for patients. Fourteen teenage patients, as well as medical staff and chaperones, spend a week at the National Sports Center for the Disabled (NSCD), in Winter Park, Colorado.

In a continuing effort to improve the lives of patients, Texas Scottish Rite Hospital for Children recognized that snow skiing is well suited for amputees, and with special equipment, they quickly become competitive and often excel at the sport.

Skiing at the renowned National Sports Center for the Disabled creates a focus for the trip, but the personal growth and challenges the teens overcome are often more life-changing than the actual accomplishment of skiing. The goal of the trip is to foster a sense of self-confidence, discovery and independence for these teens.

Since the first Amputee Ski Trip in 1981, the community has teamed up with the hospital to make this opportunity possible to patient families. American Airlines has sponsored the trip since 2005. Prior to that, Delta Airlines supported the event for more than 20 years. Multiple other generous supporters from the community, including the Stephen M. Seay Foundation, help make this trip possible!

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