National Patient Ambassadors
Shriners Children's selects National Patient Ambassadors each year to represent the healthcare system at local and national events. The ambassadors share their stories of perseverance and how Shriners Children's has made a dramatic difference in their lives.
Katherine’s life was turned upside down when she was involved in a car accident. At 16 years old she found herself fighting for her life. Suffering from severe burns on her left leg Katherine and her family found it difficult locating a medical facility capable of treating her injuries. Katherine’s family was then told about Shriners Children’s, Boston. With the help of her doctors and nurses, Katherine began the long and difficult road to recovery. Katherine loves playing college soccer for Northeastern University and is studying to become a pediatric nurse.
In the blink of an eye, young Parker’s life would forever be changed. Parker, his mother and younger brother were involved in a car accident that resulted in the loss of much of Parker’s right leg. It didn’t take long for Parker and his family to find Shriners Children’s Greenville and their prosthetic and orthotic specialists. With the help of a prosthetic limb, Parker is back in the game and playing the sports he loves.
Carter (10) has been a patient at Shriners Children’s Salt Lake City since 2019. When he was about a year old he was diagnosed with Multiple Hereditary Exostoses (MHE), a rare genetic bone disorder that causes bone tumors (osteochondromas) at the growth plates throughout his body. This disorder mainly affects the long bones in Carter’s body, but he also has tumors in his hands which can make daily life a little more challenging than normal. He must have surgery to remove the tumors. Carter calls his bone tumors his “super bones.” Carter is an MHE Warrior because he does not let his disorder get him down! He takes on each day with a great attitude, always smiling and is a very active boy! Carter attends Helen Marie Smith Elementary School in Las Vegas. He enjoys spending his time with his family, reading, building LEGOs, playing video games, playing kickball and playing sled hockey for the Vegas Golden Chariots.
Josiah (9) was born with congenital bilateral clubfoot. He was referred to Shriners Children’s for a second opinion after his local physician felt he could no longer help him. Josiah was originally seen at Shriners Children’s Salt Lake City and then Shriners Children’s Southern California where Dr. Nguyen performed a bilateral release of his Achilles tendon and plantar fascia release. Today Josiah wears braces and is in physical therapy. He is on the road to recovery and has healed well from surgery. Josiah and his family are very thankful for Dr. Nguyen, Shriners Children’s and the hospital staff who have played a great part in his treatment and recovery.
Angel (15) has the very rare MONA syndrome, which has similarities to brittle bone disease. He receives Zelendronate infusions from Shriners Children’s Salt Lake City and he also received his wheelchair there. Angel loves to build LEGOs, including some big ambitious Star Wars builds. He also enjoys playing video games and likes sports.
Autumn (12) was born with a rare form of dwarfism called Conradi Hunnerman Syndrome, causing her to have asymmetrical limb length differences in her legs and arms. She has severe kyphos-scoliosis, hip dysplasia, and numerous other physical challenges, but that doesn’t keep Autumn from living her best life. Shriners Children’s Southern California has been Autumn’s lifeline for all her physical needs, including surgeries, leg braces, shoes lifts, physical therapy and more. Her entire family is truly grateful for all that Shriners Children’s has done for Autumn over her life time.
Ali (13) was born with fibular hemimelia, a congenital limb deficiency, causing the absence of her left fibula bone and a shortened and bent left femur bone. Shriners Children’s doctors and prosthetists mapped out a medical plan just a few months after her birth. Together they helped Ali through her amputation surgery at 9 months, an additional surgery at 11 months, and had her walking right after her 1st birthday. In 2020 and 2021 Ali had 2 additional surgeries to help align her leg. Over the past 12 years since her amputation, Ali has received over 15 prostheses, including specialized running legs for sports. With these legs she paddleboards, bikes, hikes, plays numerous sports (most recently making her Jr. high basketball team), pitches and plays 2nd base for her travel softball team (recently hitting her first over-the-fence homerun), and has earned many gold medals in Jr. Paralympics for Archery and Track and Field (currently holding 7 US National Records for U11 age group and 3 National Records for U14. Her goal is to make it to the next Paralympic Games! She continues to surpass goals and dreams thanks to the amazing and supportive care received from Shriners Children’s Southern California and from the continued encouragement from the wonderful Shriners and Ladies she has been so fortunate to grow with.
Jaxon (9), Dallin (7) & Landon (4) When they found out he would be born with a cleft lip and possible cleft palate, Jaxon’s parents were devastated and didn’t know what to do. They believed acts of faith brought blessings, so they decided to act on faith. Shortly thereafter Jaxon’s dad was working for a local cable company when he met a leader at the Las Vegas-area chapter of Shriners International. This Shriner explained the wonderful organization and the services that Shriners Children’s provides, instructing the young father to go into the office as soon as we could with his new baby, and that they would take care of everything. Within a week, Jaxon was scheduled for a consultation in Los Angeles with Dr. Magee. His parents recall feeling such a peace and there was no question they wanted him as their doctor. A few years later they found out Dallin was going to be born with a cleft, they texted Dr. Magee and Dallin also became a Shriners Children’s patient. When Landon came along and needed similar care, Dr. Magee provided the same level of care, eventually performing eight surgeries on the three brothers.
Tanner (16) was born with Beckwith-Wiedemann syndrome, a rare genetic disorder which resulted in an overgrowth of the left side of his body. His tongue, internal organs, hand, foot, leg, everything are all larger on the left. As such, Tanner’s left leg is 40 mm longer than his right. Physicians at Shriners Children’s Southern California in Pasadena, California performed a leg-lengthening surgery to even out the length of Tanner’s legs. Tanner has been helped and supported through every step of this process and is so grateful to the Shriner’s team! Tanner loves sports and plays the viola.
Madison (15) came to Shriners Children’s Lexington to be treated for extra navicular bones and flat feet. She was finding it too painful to play softball and basketball and was having to sit out games because of foot pain. After visiting two other orthopedic surgeons who couldn’t help her, Madison found Dr. Ryan Muchow at Shriners Children’s Lexington. Three surgeries later, Madison can now withstand full varsity softball games and enjoy other hobbies like hunting, fishing and riding horses without having to stop. While recovering from her surgeries, Madison picked up a guitar for the first time and quickly fell in love with the instrument. She now enjoys playing guitar and singing. Her future plans are to play college softball, compete in barrel racing and pursue a career as a veterinarian. She also dreams of one day performing at the Grand Ol’ Opry.
Hunter (17) was preparing for a football camp when he suffered an injury that would, in many ways, put his grit and love of the game to the test. He was jumping hurdles to warm up when his feet became tangled and he fell on both knees, sustaining bilateral tibia plateau fractures and dislocating both kneecaps. The injury required immediate surgery. Dr. Ryan Muchow, a pediatric orthopedic surgeon at Shriners Children’s Lexington, put screws put in both of Hunter’s legs to reattach the shattered bones and his kneecaps were realigned. Hunter left the hospital with a brace on each leg that extended from his hip to his ankle, and started on a long road to recovery. Eventually Hunter was able to resume his dual positions of offensive and defensive lineman his junior football season with no issues. He plans to pursue playing football in college as well. “If I had high expectations for my care and my recovery, Shriners Children’s met every one of those expectations,” Hunter said. “They were never unsure and were able to guide me the whole way.”
Cole (14) and his family learned about the rehabilitation care at Shriners Children’s as a result of Cole sustaining a traumatic brain injury. He was struck by a car while riding his bicycle in the resort beach town of North Wildwood, New Jersey, during the summer of 2021. After his initial care at another healthcare facility, his parents were thankful to find Shriners Children’s nearby to get Cole the needed rehab. Cole’s therapy program has consisted of physical and speech therapies focused on higher-level mobility and cognitive tasks. He had to skip out on contact sports for a year. During that time, he picked up running track to get him ready to be back in the game with his true passion, basketball. He was cleared to play this past season. He is wrapping up his eighth-grade year and looking to select a high school for Fall 2023.
