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Beating Scleroderma and Actualizing Invention With Grit

Beating Scleroderma and Actualizing Invention With Grit

by | May 13, 2024 | Rheumatology

Previously published in Rite Up, 2024 – Issue 1.

Lino is an inventor who is set on changing the world. “Problems without solutions inspire me to invent,” he says. “I’ve been tinkering with stuff since I was little, but I didn’t realize all this problemsolving was called inventing until I was in the fourth grade.” That was when Lino, of Frisco, invented the String Ring, an adjustable band worn as a ring that protects your finger while playing a stringed instrument. Lino played the cello and wanted to find a way to keep his fingers from blistering without changing the sound. “When you finally solve a problem that is personal to you and that affects a lot of other people, it’s the best feeling in the world,” he says.
 
His mother, Sharon, says that Lino has never met a challenge he does not want to conquer. “Lino is kind, smart and positive, but ‘grit’ is the perfect word for him in everything he does — at school, in sports and through his journey at Scottish Rite,” she says. “How he handled his diagnosis is how he handles his inventions.”

When Lino was 12, his hands began swelling. He could not make a fist, and when it got cold, his hands changed colors, turning red, even purple. His pediatrician referred him to Scottish Rite for Children where he was evaluated by orthopedic hand surgeon Chris Stutz, M.D. Dr. Stutz found nothing wrong with the bones in his hands but suspected a rheumatic condition and referred him to rheumatologist Lorien A. Nassi, M.D.

Dr. Nassi diagnosed Lino with juvenile systemic scleroderma, a rare, chronic autoimmune disease in which the immune system causes inflammation and tissue changes that lead to a tightening and thickening of the skin. The condition affects approximately 3 per 1 million children. There is no cure, and it can progress, affecting the internal organs, such as the heart, lungs and kidneys.

“It felt like an out-of-body experience,” Sharon says. “We walked in with a healthy child, and all of a sudden, we got a diagnosis of something we didn’t understand.” Dr. Nassi and her team, including a psychologist and a child life specialist, consulted with the family, explaining that Lino would need to take a weekly injection. “They told him not to search it on Google,” Sharon says, “that he could take the day off from school, but he was like, ‘No, I have to go to school. I have to give a presentation.’”
 
Lino began taking injections as well as receiving physical and occupational therapy to increase manual dexterity, flexibility and range of motion. “The hardest part was getting the injections and then learning how to administer them myself,” Lino says. “I didn’t like needles, but I got over that, and I feel better now that I’m doing it myself because I feel more in control.”
 
After four years, Dr. Nassi is tapering off the medication. “Lino has had a remarkable trajectory,” she says. “Unfortunately, so often rheumatology diagnoses are only seen as severe, lifelong conditions with significant limitations. I love that Lino shows us that even some of the more serious rheumatologic diagnoses can have great outcomes.”
 
Lino hopes to finish treatment this summer. “I’m lucky they caught it so early, and now it’s better,” he says. “I’m really thankful for that.”
 
“We will be forever grateful to Scottish Rite, Dr. Nassi and Dr. Stutz for diagnosing Lino right away,” Sharon says. “Thanks to them, against many odds, Lino has no moresymptoms and will be medicine-free, an outcome that is as rare as the disease itself.”

But, Lino does not want his success story to be a rarity. He is pursuing becoming a scleroderma advocate who shares his story, creating awareness to raise funds for research, and one day, a cure. He aims to ensure that other kids find the right doctors, get diagnosed early and know that there is hope.

Scleroderma has not stifled Lino’s creativity. By the time he was in eighth grade, he had masterminded four inventions. His most recent — Kinetic Kickz 2.0 — has a patent pending. An improvement on his original Kinetic Kickz, 2.0 is a shoe with a generator built into the sole that collects energy from walking, allowing the wearer to power a device with their shoe. The idea came to him one day after school on the soccer field. He needed to call his mom to come pick him up, but his phone was dead, and he did not have a charger. “I spent months trying to light an LED bulb to prove that I could create enough energy to charge something,” he says.

Invention Convention Worldwide recognized Lino’s genius, awarding him first place in his age group for Kinetic Kickz 2.0 at the 2021 Globals competition presented by Raytheon® Technologies, now RTX. TIME magazine noticed and selected him as a 2021 Kid of the Year finalist.

The 17-year-old continues to improve his inventions as he conceives of new ones. His Scottish Rite journey has inspired him to consider medical-based inventions, and he is debating whether he wants to be a doctor or an engineer. “I’m not sure yet,” Lino says, “but I am sure of one thing. I want to be a world-changer — someone who helps make the world a better place through their actions, or for me, through my inventions.”

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A Newfound Freedom to Walk

A Newfound Freedom to Walk

by | Nov 6, 2023 | Prosthetics & Orthotics

KaDeyja, of San Antonio, enjoys watching Cocomelon® and listening to her favorite song, “The Wheels on the Bus.” During her physical therapy session at Scottish Rite for Children, this animated music video set the tone, creating a playful atmosphere and soundtrack to a pivotal day in her life. At 16 months old, KaDeyja achieved a milestone that any doting parent would record in a baby book — taking her first step. But for KaDeyja and her parents, this accomplishment was extraordinary.

KaDeyja was born with limb differences affecting her right arm, left hand and both legs. Hand surgeon and Director of the Center for Excellence in Hand, Scott Oishi, M.D., FACS, manages the treatment plan for her hand. Chief of Staff Emeritus J. A. “Tony” Herring, M.D., manages the treatment plan for her legs.
 
“In the beginning, she couldn’t roll over,” Stephanie, her mother, says. Later, she had difficulty sitting up and keeping her balance. “We would prop her up with a Boppy® pillow,” she says. For many months, Stephanie carried her everywhere. Eventually, KaDeyja figured out how to sit up and maneuver on her own by scooting on her bottom.

When KaDeyja was developmentally ready to begin walking, Director of Prosthetics Don Cummings, C.P., L.P., fitted her for two prosthetic legs. And then, the big day arrived. KaDeyja tried out her new legs with assistance from physical therapist Megan Mendoza. Pushing a baby doll in a shopping cart, KaDeyja took one step and then another.
 
“When she took her first step, I was like, ‘Oh my gosh, she’s doing it!’” Stephanie says. “It was very emotional.” With focus and determination, KaDeyja was walking. Every step was a triumph. As the medical team cheered her on, she walked over to each person in the room and gave them a high five.
 
“Scottish Rite for Children has given us hope,” Stephanie says. “It’s a forever kind of journey at Scottish Rite. They are a piece of our family.”
 
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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.”

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Donor Spotlight: A Promise Kept in Abundance

Donor Spotlight: A Promise Kept in Abundance

by | Jul 7, 2023 | Spotlight

“Scottish Rite for Children provides the best care in the world, regardless of a family’s ability to pay,” says retired Texas State Senator Troy Fraser. Fifty years ago, Troy and his wife, Linda, experienced this world-class care firsthand — at a time when they needed it most. It changed the trajectory of their lives and inspired them to become champions for Scottish Rite.

The Frasers had their first child, a son, in 1972. Chase was born with clubfoot, a surprise to the family. “His foot was totally upside down,” Linda says. “The doctor said, ‘We just hope that he can walk,’ and I said, ‘No. Chase will be able to walk.’” The Frasers discovered Scottish Rite for Children and found answers for Chase’s condition with the chief of staff at the time, the late Brandon Carrell, M.D.

“Linda was pregnant with our second child, and the company that I was working for went bankrupt, so I lost my job and our health insurance,” Troy says. Anticipating a new addition to the family and Chase’s care, Troy tried to make arrangements with Scottish Rite to pay for Chase’s surgery over time, unaware that Scottish Rite would cover his care. When they learned that they would not receive a bill, it was a profound moment that stuck with them. “Scottish Rite was like an angel that came down from heaven,” Troy says. “Linda and I made a commitment that we would pay them back.”

The Frasers have graciously kept their promise and then some. For decades, they have supported Scottish Rite. Troy helped start the Central Texas Golf Classic, a golf tournament in Austin that has raised significant funds to benefit Scottish Rite patients. “To witness the heart that Troy, Linda and their family have for Scottish Rite for Children is truly amazing,” says Vice President of Development Stephanie Brigger. “They have experienced what Scottish Rite is all about, and now they are living out their commitment to support others who need our services and expertise.”

The Frasers’ favorite time of year is when a group of Scottish Rite patients participate in the Amputee Ski Trip in Winter Park, Colorado. Since 2015, the Frasers have hosted a dinner for the participants at their Colorado home. “To see those big smiles on their faces when they’re coming down that mountain,” Linda says, “it’s magical.” Moved by the experience, the Frasers established the Fraser Family Fund, which provides funding for the ski trip, prosthetic limbs and rehabilitation for Scottish Rite patients. To date, the Frasers have contributed nearly $1 million.

“What Scottish Rite did for our family was such a blessing,” Linda says. “They gave our son the ability to walk and become the man he is today. Our lives would not be what they are without Scottish Rite.”
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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.”

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