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Lillie’s Leap of Faith: From Cerebral Palsy Patient to Future Journalist

Lillie’s Leap of Faith: From Cerebral Palsy Patient to Future Journalist

by | Nov 15, 2024 | Neurology

As soon as you step through the doors at Scottish Rite for Children, patients and their families are immediately embraced by a culture dedicated to fostering lifelong connections. When a patient completes treatment, staying connected beyond their time at Scottish Rite remains fundamental.

Former patient 20-year-old Lillie, of Arlington, describes her care journey as transformative and miraculous. “I’ve found so many friends who were also Scottish Rite patients,” Lillie says. “We’ve been able to bond as patients and as people living with different abilities.” Lillie was diagnosed with Hemiplegic cerebral palsy (CP), a condition that affects the posture, movement and balance on one side. Her case of CP resulted in a limb difference in her left leg.

Lillie started coming to Scottish Rite in 2021 when she was a senior in high school. Her physician referred her for multidisciplinary care after noticing changes in her walking, a symptom of her limb difference that had started causing foot and ankle pain. Orthopedic pediatric surgeon Jaysson T. Brooks, M.D. performed a surgery called gastrocnemius recession – a procedure that lengthens the calf muscles and tendons. Then, Scottish Rite orthotists designed a custom ankle-foot orthosis to stabilize her ankle and foot. “From buying two boxes of the magical popcorn to updating Dr. Brooks on all the fun things I’m up to,” says Lillie. “Scottish Rite is a miracle to me.” 

The support she received from her Scottish Rite care team would ultimately prepare her for her next journey she would embark on – college. Her entire care team was invested in preparing Lillie’s condition for life at her college of choice, Texas Christian University (TCU). As a parting gift, Lillie received Scottish Rite’s Legacy Scholarship to pursue a degree in journalism and confidently chase her dreams. “Cerebral palsy may sound intimidating at first,” says Lillie, “But just know there’s a community of people with cerebral palsy who are scientists, comedians, journalists and more. We are here, we are brave, we are beautiful and we are limitless.”

Lillie has gone from undergoing surgery to now conquering the world of journalism. She aspires to ask questions about the world and write stories based on the answers, much like her fellow TCU alumnus and role model journalist Bob Schieffer. “To kids with CP, you are perfect,” Lillie says. “The way you walk is perfect, your wheelchair is cool, your leg braces are awesome and your surgery scars are epic! Being who you are is the ultimate superpower, and no one take that away from you.” We can’t wait to see the great things you accomplish, Lillie!

Diagnosis to Dedication: How Aaliyah’s Scoliosis Journey Inspires Change

Diagnosis to Dedication: How Aaliyah’s Scoliosis Journey Inspires Change

by | Aug 14, 2024 | Scoliosis & Spine

18-year-old Aaliyah, of Kress, is transforming her personal journey with scoliosis into a source of inspiration for young girls with similar diagnoses. “Scottish Rite means so much to me by helping me find my passion in changing lives,” Aaliyah says. She shares her transformative care she received, hoping to make a scoliosis diagnosis less intimidating to patients.

Aaliyah was diagnosed with juvenile idiopathic scoliosis (JIS) after her routine physical at age 9. Her family faced a difficult decision: undergo spinal fusion surgery or risk losing Aaliyah’s ability to walk. Determined to find another way, Aaliyah chose to wear a spinal brace for 22 hours a day over a span of seven years. In 2021, Aaliyah’s back pain progressed, and she started treatment with pediatric orthopedic surgeon Dr. Jaysson T. Brooks. “After that visit, Dr. Brooks changed my life,” Aaliyah says. Instead of recommending surgery, Brooks suggested physical therapy as the best approach for her.

The treatment Aaliyah received at Scottish Rite fueled her passion for scoliosis awareness. Before she met Brooks, she was a member of the nonprofit organization Family, Career and Community Leaders of America (FFCLA). FCCLA offers programs, contests, scholarships and opportunities for member to develop skills needed for college and careers. Aaliyah’s experience inspired her project titled “The Journey.” This project explores her personal journey with scoliosis and the impact it had on her and her family’s lives. “The Journey” eventually placed in 5th place at FFCLA’s National Leadership Conference. Top of Form

Now, she is a prominent spokesperson for scoliosis in her community. In 2022, Aaliyah launched a scoliosis research fundraiser titled “The Outreach” for Setting Scoliosis Straight Foundation, a nonprofit devoted to empowering families impacted by scoliosis through education, connection and research. Her efforts caught the attention of mayor Johnny Taylor, who honored her dedication by declaring December 20th as both National Scoliosis Awareness Day and Aaliyah Wallace Day in her hometown.

There is no limit to the success Aaliyah will achieve! Her latest project, “My Testimony,” is a book series featuring characters LeeLee, inspired by Aaliyah, and Lillian as they embark on their journey of overcoming scoliosis. To launch the series, she organized a block party in Kress, with all proceeds going to funding the publication and illustration of the books. “I went from a scared 9-year-old to making a difference and changing lives with my story,” Aaliyah says. “I can’t thank Scottish Rite enough for changing my life!” Now, Aaliyah is attending her first year at Texas Tech University as a Pre-Medicine major. She was a recipient of our Legacy Scholarship, and we cannot be prouder of her!

Get to Know our Staff: Carlos Monroig-Rivera, Medical Student Research Fellow

Get to Know our Staff: Carlos Monroig-Rivera, Medical Student Research Fellow

by | Nov 22, 2023 | Spotlight

Scottish Rite for Children offers a Medical Student Research Fellowship (MSRF) for medical students interested in gaining experience in clinical research. MSRF fellows work with a lead faculty mentor throughout the year and several project supervisors who are pediatric orthopedic faculty at Scottish Rite. They work as a crucial part of the research teams in various centers for excellence at Scottish Rite and are responsible for a variety of research projects.
 
What inspired you to apply for the MSRF position?
What inspired me to apply for the MSRF position was my passion for pediatric orthopedic research. Since meeting Dr. Norm Ramirez, a former pediatric orthopaedic fellow at Scottish Rite, I’ve always been interested in how orthopedic research plays a role in advancing orthopedic knowledge and making a difference in children’s lives.

Have you always been interested in medicine and/or research?
Yes, I am a recent medical doctor graduate from Puerto Rico aspiring to improve pediatric patient care while following my dream of becoming an orthopedic surgeon.
 
 
What is it like working at Scottish Rite for Children?
Working at Scottish Rite for Children has been incredible. The institution’s diverse leadership and commitment to staff and employees make you feel like you belong. Their commitment to the well-being of children is truly inspiring. Scottish Rite for Children’s supportive environment has provided me with invaluable learning opportunities that I will hone to become an ethical and competent orthopedic surgeon.

Can you share a few sentences about someone at Scottish Rite who has been a mentor to you and how they have impacted your experience? What project are you working on with that mentor?
One of my mentors at Scottish Rite has been Jaysson T. Brooks, M.D., a renowned pediatric orthopedic surgeon. Dr. Brooks has had a profound impact on my experience by guiding me through my orthopedic residency application and several research projects related to pediatric spine deformity. One of the projects we are working on together is looking at the effect that a T1 Upper Instrumented Vertebrae has on Proximal Junctional Kyphosis Risk in Adolescent Idiopathic Scoliosis Patients.
                                                                                              
 
How do you think this experience will impact your career path?
This opportunity helps me explore the academic aspects of orthopedics, dive into pediatric orthopedic research and collaborate with renowned experts in the field. This experience reinforced my commitment to becoming an orthopedic surgeon, providing me with the understanding and discipline to excel at my job.
 
What progress have you made toward your career goal since beginning the program?
Since beginning the program, I have contributed to several research projects and developed a better understanding of the complexities in pediatric orthopedics. I’ve also had the privilege of presenting my work at a resident symposium and published research papers in orthopedic journals.
 
What is your favorite project that you are currently working on or have worked on at Scottish Rite?
My favorite project at Scottish Rite has been investigating compliance rates and patients reported outcomes for each type of brace prescribed to treat spinal deformity. It is a challenging and meaningful project that could impact patient care and quality of life. Having the opportunity to work alongside a supportive and knowledgeable team has made me discover a passion for the pursuit of knowledge and the process of curiosity, making me feel fulfilled at work by enjoying the process and making a difference in the lives of children.

What advice do you have for future MSRF participants?
For future MSRF participants, I would advise them to work hard, be proactive and make the most of the resources available at Scottish Rite for Children. Don’t be afraid to ask for help, don’t be discouraged by setbacks or slow progress and stay committed to your goal. Never forget to sharpen the saw. As you step into this journey, continue renewing and improving yourself. Take care of yourself along the way, and take simple steps to sustain your personal growth.

What is one thing most people don’t know about you?
One thing most people don’t know about me is that I’m a fantasy basketball enthusiast and analyst. I’ve always been interested in the strategic components of the game, and this passion always takes me to study the secret world of statistics and strategies when the NBA season begins. I spend nights looking over player statistics, studying trends and predicting breakout performances. I’ve even won a few friendly leagues. The best part is that my love for fantasy basketball has improved my real-life understanding of the game. Fantasy basketball has taught me the art of decision-making, risk assessment, player roles and team strategies. So, if you ever see me with my laptop during the NBA season, don’t assume I’m just catching up on work. I might be fine-tuning my fantasy basketball lineup.

Anything else you would like to add?
In closing, I’m grateful for the chance to be a part of the MSRF program at Scottish Rite for Children, and I look forward to continuing my journey of becoming an orthopedic surgeon with the knowledge and experiences gained throughout my time here.

We’re recruiting Medical Student Research Fellows for 2023! If you are a third-year medical student looking to take a gap year before applying to residency, take advantage of this unique opportunity! Only three positions are available for 2024.

Learn more and apply here on our Careers page.

Ayden the Inspiration – Resilience and Determination Despite Trauma

Ayden the Inspiration – Resilience and Determination Despite Trauma

by | Aug 8, 2023 | Prosthetics & Orthotics

Cover story previously published in Rite Up, 2023 – Issue 2. by Kristi Shewmaker    Ayden, age 13 of Valley View, describes himself as outdoorsy. He learned to ride horses before he could walk. Every day after school, he feeds his flock of sheep that pasture next to the house his father built for the family. When his dad gets home from work, they drive across the highway to feed their horses, ponies, cows, chickens and homing pigeons. Born and raised in the country, Ayden lives with his parents Liz and Sergio and his younger sister and brother on some land they simply call home.   Ayden’s family is close-knit. His grandparents, Liz’s parents, live just across the pasture. Every Sunday, Ayden hops the fence and runs to their house where his grandma makes breakfast for everyone. After their family meal, the guys get to work doing chores around the property.
In February of 2022 while working on the farm, Ayden suffered a traumatic injury with heavy farm equipment and lost his arm. He was transported by CareFlite® to Children’s Medical Center Dallas, a Level 1 Trauma Center, where pediatric orthopedic surgeons Corey S. Gill, M.D., M.A., and Jaysson T. Brooks, M.D., performed an amputation and reconstruction of Ayden’s right arm above the elbow. “I didn’t think anything could be done to save any part of his arm,” Liz says, “but they did an amazing job, and I’m thankful for that.”

A few weeks after surgery, Ayden and his family reunited with Dr. Gill at Scottish Rite for Children Orthopedic and Sports Medicine Center in Frisco. They also met the multidisciplinary team of experts who would care for Ayden, including pediatric psychologist Emily Gale, Ph.D., prosthetist Dwight Putnam, C.P., L.P., and occupational therapist Lindsey Williams, O.T.R., C.H.T. “When you lose a limb, the family goes through a process of grief,” Dr. Gill says. “So, it’s really important for our Psychology team to work with them early on.” During his recovery, Ayden and his family toured the Prosthetics Lab at the Dallas campus to learn about the possibility of wearing a prosthetic arm and how it could be customized for him. “It was important for Ayden to know that whether he has a prosthesis or not, it does not define him,” Dr. Gill says. “He could do things with it or without it, but he was going to be great regardless.” Ayden decided to move forward with the arm. After his limb had time to heal, he would return for an evaluation with Dwight. In the meantime, Ayden began occupational therapy with Lindsey twice a week. Initially, she focused on caring for his residual limb, including massaging his scar to desensitize the limb in preparation for wearing a prosthesis. “The day I met Ayden, he was very quiet,” Lindsey says. “He was trying his best, but he didn’t yet know the potential that he had. We were just trying to get rid of his phantom limb pain, trying to cope in that way.” Phantom limb pain occurs when the brain perceives tingling and painful sensations in the limb that is no longer there. To resolve the pain, Lindsey used mirror therapy to trick his brain into thinking his right hand was there. Because Ayden lost his right arm, and he was righthanded, they also focused on dominance retraining, or training his left hand to become the dominant hand. They worked on strengthening the grip of his left hand, as well as coordination, fine motor skills and handwriting.
After the swelling subsided in Ayden’s limb, Dwight recommended a body-powered prosthetic arm. Built specifically for Ayden, the arm attaches to a prosthetic socket that fits onto his residual limb. The prosthesis is worn with a harness that loops around his left arm. The movement of his shoulder creates tension in the harness that is transferred to a cable system, which moves a terminal device in the form of a hand or a hook. Initially, Ayden chose the hand so that it would look like his fingers. The hand has a tripod grasp, meaning the first two fingers and thumb pinch together to grab objects.

For many months, Ayden worked with Lindsey on completing tasks with his left hand as well as learning how to use his prosthesis. They problem-solved daily activities, like how to get dressed, button buttons and zip zippers. In one session, he learned to tie his shoes with one hand. They also worked on two-handed tasks, like scooping ice cream, opening a sauce packet, and cutting apples and avocados.   “Ayden has grown so much,” Lindsey says. “He comes to appointments prepared with a list of things he wants to work on. Early on, he wanted to help his mom. He brought in clothes to fold and hang. He wanted to be able to take out the trash.”
After a year, Ayden decided to try the hook on the end of his prosthetic arm. He wanted to use it to feed his sheep. The pinch on a hook is stronger and can grasp heavier items. Before his injury, Ayden fed his sheep by pouring grain out of a five-gallon bucket into a trough. Lindsey taught him to use the hook to hold the handle while his left hand tilted the bucket. “Almost instantaneously after we added the hook,” Dwight says, “it has increased his abilities to do the things he used to do and contribute to his family.”

“I think he will continue to explore and find things he wants to do with his prosthesis,” Dr. Gill says. “Whether it is for things around the farm or adaptive sports, it’s our job to help him succeed in whatever he wants to do, and I think he will.”   Now, Lindsey is preparing Ayden for high school. She is teaching him one-handed typing using a Dvorak keyboard, which locates the important letters directly under your hand. They just put new stickers on the keys. “Lindsey has really been a blessing to us,” Liz says.   The best part of his care journey, Ayden says, has been getting help from Lindsey. “I’ve learned that I can still do everything the same,” he says. Liz adds that Ayden says he wants to be Dwight, and later in his life, he wants to build prosthetic limbs.
 “At Scottish Rite, they care more about the kids than anything else,” Sergio says. “They actually take care of you. They don’t care if you’re Hispanic, White, Black — whatever color you are — they treat everybody the same.”   In a recent session, Ayden and Lindsey played Jenga®. Ayden grasped a block with his hook. As he wiggled it, it looked like the tower might fall. “But, he got it out,” Lindsey says, “and when it didn’t fall, he had the biggest smile on his face.”

“Nothing is off the table for Ayden,” she says. “The injury was so traumatic for him. It could’ve defeated him, but he has just soared.”

“We can’t thank everyone at Scottish Rite enough,” Liz says. “Something that has been horrible and tragic is turning out to be something wonderful and positive for our child.”

Read the full issue.

Gracee Gets Back in the Game After The Tether™ Spinal Surgery — the First at Scottish Rite

Gracee Gets Back in the Game After The Tether™ Spinal Surgery — the First at Scottish Rite

by | Jun 1, 2023 | Scoliosis & Spine

Cover story previously published in Rite Up, 2023 – Issue 1.
by Kristi Shewmaker

Gracee never imagined that one day she would play basketball in the Dallas Mavericks® practice gym, much less play one-on-one against her 6’5” pediatric orthopedic surgeon. As a 15-year-old high school varsity basketball player of Tuscola, she also never imagined that three months before that, she would be the first patient at Scottish Rite for Children to receive The Tether™ Vertebral Body Tethering System, a surgically implanted spinal device that is used to treat scoliosis.

Gracee grew up with basketball. “As a little girl, she went to the gym a lot because we were in the gym a lot,” says Carla, her mother. Gracee’s father, Hunter, is the high school varsity girls basketball coach. Gracee watched him coach her older sister before playing herself.

Gracee started playing competitive basketball in second grade. “We sent letters home to the girls in her class saying that we were going to meet one day a week to skill and drill,” Hunter says, “and it grew from there.” Throughout the years, Hunter coached Gracee and her team in various leagues. In middle school, Gracee joined her school team. In high school, Gracee started on the varsity team with some of the same girls that she has played with since second grade. “What I love most about basketball is the friendships that come with it,” Gracee says.

The summer before her freshman year, Gracee was seeing a chiropractor for an issue with her hip flexor, and Hunter mentioned that she had scoliosis during the appointment. A school nurse had noticed it during a routine screening when Gracee was in elementary school. Her curve was less than 10°, so her pediatrician had been monitoring it. “When she laid down on the chiropractor’s table, and I saw her back,” Hunter says, “I was like, ‘Oh my gosh!’ We didn’t realize to what degree the curve had gotten.”

Hunter contacted Scottish Rite for Children for help, and there, Gracee was diagnosed with adolescent idiopathic scoliosis. This condition occurs in patients ages 10 to 18, and the cause is unknown. Her curve measured 42°. “I was shocked,” Gracee says. “I didn’t think it would be that bad.”

Initially, Gracee wore a brace to prevent further progression and to try to avoid surgery. However, within months, her curve progressed to more than 50°, which experts call the surgical threshold — the point when surgery is recommended to stop a curve from getting larger. “In a certain subset of kids wearing their braces, the curve still progresses,” says Jaysson T. Brooks, M.D., pediatric orthopedic surgeon. “They have so much growth potential left, their spine overpowers the brace.”

When Gracee and her family first met Dr. Brooks, they began discussing treatment options in anticipation of the need for surgery. Dr. Brooks presented two surgical options, including spinal fusion, which he calls “the gold standard treatment,” and The Tether™, a new non-fusion surgical device he had used previously to treat scoliosis but had not been used at Scottish Rite.

In a spinal fusion, screws are inserted into channels of bone surrounding the spinal canal. Two rods are secured into the back of the screws with set caps and tightened with a torque wrench. Bone graft is placed along the implant to help the vertebrae fuse together. This procedure stops the growth in the previously curved part of the spine and prevents the curve from coming back.

When using a tether, a flexible cord is attached with screws to the vertebrae on the side of the spine that curves outward, which is also known as the convexity of the curve. The tether slows the growth on the outward side of the curve while allowing the inward side of the spine to continue growing. During surgery, the flexible cord is tensioned, which corrects the curve to some degree. As a child grows, the spine grows straighter because the tether guides it into the correct alignment. The Tether™ is a non-fusion implant that allows children to maintain the majority of their natural spine flexibility
 
“Gracee was a good candidate for this procedure because her curve is flexible, and she was still really young from a bone standpoint, or skeletal maturity,” Dr. Brooks says. “The younger your skeleton is, the higher chance you have of getting taller, and using a tether requires you to be able to grow taller because it capitalizes on that growth.”
 
Over several appointments, Dr. Brooks discussed the pros and cons of each surgery, the difference in incisions, how X-rays look when rods versus a tether are attached to the spine, and the potential downsides and risks. “He did a really good job explaining the difference between the two,” Gracee says. “He also did a really good job of making me feel calmer.”
 
“There wasn’t a lot of anxiety on our part about which way to go,” Hunter says. “In my mind, vertebrae are meant to be flexible. If you can keep it the way God designed it, I think you’re better off. Obviously, there are times when the fusion is the only answer, but with this being another option, we wanted to try it.”
 
Gracee’s family chose this device because they wanted to maintain the overall flexibility of her spine as well as endure a shorter recovery period, so that Gracee could get back to playing basketball as quickly as possible.
 
“They are very intelligent and very pragmatic to approach a procedure that is this new and say, ‘I think this is going to be the right thing for my daughter,’” Dr. Brooks says. “They were mature enough as a family to say, ‘we’re okay with the potential consequences, but we think that the benefits outweigh the risks.’ You couldn’t have asked for a better family to be the first family for The Tether™ at Scottish Rite.”
In April of 2022, Gracee underwent surgery. “I wasn’t that nervous going into it,” Gracee says. “When I got out, I was excited to finally be good. I was excited about it.”
 
“The whole time, I felt like she was in very good hands,” Carla says. “Dr. Brooks’ knowledge is one thing, but he is very compassionate and caring as well. I truly felt like he loved my child.”

Two weeks later, Gracee went back to school. After six weeks, she played her first post-surgery game, and after three months, she found herself at the Dallas Mavericks® practice gym playing basketball with Dr. Brooks.

“It was a really cool experience,” Gracee says. “Dr. Brooks did pretty good.”

The feeling was mutual for Dr. Brooks. “It was a special opportunity for sure,” Dr. Brooks says. “I was pretty good at basketball in high school, but I’m super out of shape now. The only thing I had to my advantage was my height. Where she beat me in speed, I used my height.”
 
Gracee has played shooting guard for as long as she can remember. Hunter explains that she shoots in the 40% range from the three-point line. “Gracee’s a good shooter because she’s up at the gym at 5:00 or 5:30, three or four mornings a week working on her shots,” Hunter says. “Our basketball program is highly competitive. They’re ranked No. 2 in the state.”
 
In December, Gracee’s team won the Whataburger® Basketball Tournament, an invitation-only tournament in Fort Worth. When it was over, five players out of approximately 160 girls were chosen for the alltournament team. Gracee was one of the five.
 
“Going from being on a surgery table in April to being able to do that in December is just phenomenal,” Hunter says. “Gracee’s always been a spunky kid. There wasn’t much spunk a year ago, but we’re seeing it come back.”

Today, Hunter says that they have no regrets about choosing tethering, but he knows that it is still early. During surgery, Gracee’s spine was corrected to a little more than 30°. The goal is that the tether will continue to straighten her spine as she grows.

“If Gracee had walked into my clinic with a 30° curve, she would not have gotten surgery because 30° isn’t big enough,” Dr. Brooks says. “In the end, if nothing changes, it’s still a win because she has a curve that is stable. There are lots of kids walking around with 30° curves who are living full, successful lives.”

Hunter says that they would be happy if her curve stayed where it is and ecstatic if it improves even more. “We’re just fortunate that we’re talking about a scoliosis curve that is manageable,” Hunter says. “When you see what other families at Scottish Rite are dealing with and the care that you see being administered to them, it’s as close to heaven on earth as you think you’ll ever see.”
 
“Everyone works so hard to make the kids at Scottish Rite feel at home, to make me feel at home,” Gracee says. “I wasn’t scared to be the first kid at Scottish Rite to get The Tether™. I like being groundbreaking. I like being the first.”
 
“And, our experience at Scottish Rite,” Hunter says, “has been nothing but first-class.”

Read the full issue.