The Memorial Tournament Patient Champion Program is designed to recognize the strong, driving spirit and optimistic outlook of each patient that inspires not only their family and loved ones, but the entire community. Each year, eight Patient Champions from Nationwide Children’s Hospital have the opportunity to take center stage for pre-tournament events and meet PGA TOUR professionals and VIP Tournament experiences.
Diagnosis: Progressive Sensorineural Hearing Loss
Hometown: New Albany, Ohio
Arjun was diagnosed with unilateral sensorineural hearing loss (SNHL) at birth. By the time he was three months old, he was fitted with a hearing aid for his left ear and began auditory verbal therapy with a specialized speech therapist at the age of six months. When he was two, he developed hearing loss in his right ear and his diagnosis changed to progressive bilateral SNHL. Because his hearing loss continued to worsen in both ears, his parents feared that progression to profound hearing loss in both ears could become a reality.
Arjun underwent intensive therapy and was closely monitored, but the hearing loss continued to progress. His speech and language development began to lag. Fortunately, thanks to the experts at Nationwide Children’s Hospital, he was able to receive a cochlear implant in his left ear when he was four and in his right ear when he was six.
Progressive Sensorineural Hearing Loss is permanent, and there is no cure, but there is help – like the cochlear implant that Arjun received. A cochlear implant is different from a hearing aid in that it does not make sounds louder. Rather, the device is designed to send impulses directly to the auditory nerve, which then carries sound signals to the brain.
“We struggled early into this journey with feelings of hopelessness, anger, and grief over the loss of ‘normalcy’ for our son. The decision about whether to proceed with cochlear implant surgery at both points in time kept us up at night. But the care he has received every day brings with it remarkable progress and renewed confidence that Arjun’s future is bright. Nationwide Children’s Hospital has given us an outstanding care team for which we are eternally grateful,” says Veena, Arjun’s mom.
Today, Arjun is an energetic, charismatic boy doing great in second grade. He enjoys playing sports – especially tennis, basketball, flag football and soccer. He loves playing the piano and wants to be a scientist and inventor when he grows up. Arjun is an amazing big brother who adores his younger sister, Samina.
Diagnosis: Wilms tumor, kidney disease, kidney transplant recipient
Hometown: Chesterville, Ohio
Brielle originally came to her parents at 18 months old as a foster child. Even though she was a toddler, Brielle wasn't walking or talking and she received her nutrition through a feeding tube. She had just completed her last round of chemotherapy due to her Wilms tumor (a type of kidney cancer) and was visiting Nationwide Children’s Hospital four times a week for hemodialysis because she had lost both of her kidneys to the disease.
Following hemodialysis, Brielle transitioned to getting peritoneal dialysis for 10 hours a night, every night, in her home. When she was only four years old, she underwent a kidney transplant and received a kidney from a living donor through her family’s church.
Today, Brielle is eight years old and thriving despite her multiple health challenges. Additionally, she has been officially adopted by her parents! After completing an intensive feeding program at Nationwide Children’s, Brielle is now able to eat by mouth and has been walking and talking since she was two. She still needs to come to Nationwide Children’s to be followed by various clinics, but continues to make huge strides.
“Nationwide Children’s Hospital not only saved my daughter’s life on multiple occasions but they also took Brielle under their wing. I am so grateful they were there before I could be. Even now, seven years later, staff will still pop in when Brielle is admitted and tell us how they remember caring for her as a baby. Nationwide Children’s has always been there for us,” says Alysia, Brielle’s mother.
When you meet Brielle you will be greeted by her contagious smile! Brielle loves dogs, princesses, singing, dancing and participating on her cheer team.
Diagnosis: cerebral palsy, Kawasaki disease, epilepsy
Hometown: Reynoldsburg, Ohio
D’Marion, also known as “Mari,” is an example of bravery and strength. A real-life hero to his family and friends, Mari fittingly loves superheroes, especially Batman and Superman.
Mari’s courageous journey began when he was born full term, but with low blood platelets. A scan the next day revealed he had a cyst on his brain and he was sent to Nationwide Children’s Hospital right away. Four months later, he underwent surgery to help drain cerebrospinal fluid from certain areas of the brain.
When Mari was a little over two years old, he was diagnosed with cerebral palsy. At three, Mari was also diagnosed with Kawasaki disease, a form of heart disease, and shortly after started having seizures and received another diagnosis – epilepsy.
Now 11 years old, Mari doesn’t let his disabilities get the best of him or stop him from being the best kid he can be. He is spunky, full of energy and loves to laugh.
“Nationwide Children’s has been a blessing to my family. The staff that we have encountered is amazing and knowledgeable. I never feel like I do not know what is going on. The members of the CP Team have been so good to our family. They are very informative and call just to check on us. Everyone loves Mari. I am so grateful that I live in Columbus and that I have Nationwide Children's Hospital locally,” says Angel, Mari’s mom.
Mari’s hometown of Reynoldsburg started a sports group for special needs kids called “The Superheroes.” They play baseball, softball, flag football and soccer. Mari has played soccer for them since they started the team and recently joined the flag football team, too.
Diagnosis: Hyoplastic left heart syndrome, Pulmonary Hypertension, End Stage Renal Disease
Hometown: Grandview, Ohio
Ella was diagnosed with hypoplastic left heart syndrome before she was born. She has undergone multiple open-heart surgeries and catheterizations at Nationwide Children’s Hospital over the course of her treatment in the first six years of her life.
Despite these setbacks, Ella lives a full, active life with her two sisters and brings joy to everyone around her. She has adapted to her changing medical needs and continues to amaze her family and everyone she meets, every day.
“Nationwide Children's Hospital is an amazing organization and world-class facility that we are very lucky to have in our backyard. Ella's journey has been difficult for her and the rest of her family, and we have made many sacrifices along the way. However, it is impossible to imagine going through it at any other place. Every time we return, we see familiar, friendly faces that make Ella smile and feel special,” says Greg, Ella’s father.
In the words of Greg, “Ella probably loves crab legs more than any six-year-old on the planet!” She also loves to play putt-putt golf, ride her bike and play on the swings on playgrounds. When she cannot go outside, Ella enjoys building LEGOs. She started kindergarten this past fall and loves to read.
Diagnosis: Osteogenesis Imperfecta
Hometown: Zanesville, Ohio
Most 14-year-olds are able to be active, rambunctious and carefree. The last thing on their minds is the possibility of somehow seriously injuring themselves. However, it is always on Isabel’s mind. In her 14 years of life, she has experienced 69 broken bones, and knows she will break more.
Isabel has Osteogenisis Imperfecta (OI), a genetic disorder characterized by bones that break easily, often from little or no apparent cause. Yet nothing stops her from pursuing her passion and love of dance as a competition dancer in hip-hop, clogging and ballet.
Isabel is passionate about sharing her experiences with others and is an inspiration to all who meet her. She has visited local schools to educate students about her disease and to share her message of always staying true to yourself. Isabel took third out of over 18,000 entries in a statewide essay contest where she was challenged to choose one word that she lives by. She chose “perseverance,” and wrote about her life with OI and how she does not let it define her life. She says, “My bones are easily broken, but my spirit is unbreakable.”
Whenever she breaks a bone, her mother Vicky makes sure Isabel recites their family motto: “We can get through anything as long as we’re together.” This mantra has carried them through every fracture and over every obstacle Isabel has faced.
Through the years and the many broken bones, Isabel has received a vast amount of care from Nationwide Children’s Hospital, beginning when she was born with a broken femur. Because Vicky was so impressed with her daughter’s care, she decided to pursue a career in pediatrics. Currently, Vicky is a Clinical Nurse Leader in the Emergency Department at Nationwide Children’s Hospital.
“Nationwide Children’s has always felt like home to us. Isabel claims it as ‘her hospital.’ They’ve always done everything they can to help her feel empowered and that this disease does not, and will not define her,” says Vicky.
Diagnosis: Epilepsy, Brain tumor, stroke
Hometown: Galloway, Ohio
Matthew was in the second grade playing at recess when he had the first of what would be many seizures – although he and his family did not know that was what was happening, at the time. A few years later, Matthew’s parents witnessed one of his seizures and knew that something was wrong. Testing confirmed that eleven-year-old Matthew had epilepsy. Then, an MRI at Nationwide Children’s Hospital revealed that a brain tumor was the cause of the seizures.
Over the next few years, when Matthew should have only had to worry about school, playing sports and spending time with friends like other kids his age; he was in and out of the hospital enduring major brain surgeries. Despite this, Matthew stayed dedicated to golf and made it to districts his junior year, as well as first-team all-county his sophomore year.
In the fall of his junior year, Matthew underwent what would be his final brain surgery. When he woke up from the procedure, he was paralyzed on the left side of his body and also had impaired vision. Doctors confirmed the devastating cause for his symptoms – a stroke. During the next seven weeks inpatient at the hospital, Matthew spent an average of 10 hours a day, six days a week doing rehabilitation at Nationwide Children’s Hospital.
“Nationwide Children’s Hospital means everything to us. In addition to the medical care, many people have become lifelong friends as well,” says Angi, Matthew’s mother.
Despite still not being able to use the left side of his body, Matthew decided to relearn how to play golf, one-handed. He began practicing his new one-handed swing for hours, and hours. After a few months, Matthew was able to return to play on his high school golf team for his senior season.
“I hope that my story and experience will help inspire others to keep going, and to never give up,” says Matthew.
Diagnosis: Charcot-Marie-Tooth Disease (CMT), chronic inflammatory demyelinating polyneuropathy (CIDP).
Hometown: Dublin, Ohio
When Sal was nine years old, he lost a significant amount of weight and had difficulty walking. It was a frightening and confusing time for him and his family. After several exams and tests at Nationwide Children’s Hospital, Sal was diagnosed with two neuromuscular diseases, Charcot-Marie-Tooth Disease (CMT) and chronic inflammatory demyelinating polyneuropathy (CIDP).
Since then, he has shown just how brave and tough he is, having endured weeks in the hospital, more than 160 hours in the infusion clinic, multiple tests and procedures, unending doctor appointments, and physical and occupational therapy sessions.
Through it all, Sal has approached each day with an optimistic attitude and a smile. He inspires everyone around him with his humor, strength and courage. Sal works hard to fight the devastating effects of these diseases. He is committed to raising awareness and supporting the search for a cure.
His love of sports keeps him active. Sal swims for the Dublin Community Swim Team, plays golf with the Junior PGA and is on the Grizzell Middle School baseball team. He also enjoys scuba diving, fishing, bike riding and cooking.
“The staff at Nationwide Children's have been extremely supportive throughout Sal's diagnosis and treatment. They are knowledgeable, professional and kind. In addition to receiving treatment at the neuromuscular clinic, Sal has also been treated by the rheumatology, cardiology, endocrinology, physical medicine, neurosurgery and hematology departments. We are very fortunate to have such a world-class facility so close to our home,” says Michelle, Sal’s mom.
Diagnosis: Cleft Lip and Palate
Hometown: Pickerington, Ohio
Before Sydney was born, her parents learned that she would be born with a unilateral cleft lip and palate. The first three years of her treatment were completed with a different team, and at age three, her family decided to switch her care to Nationwide Children’s Hospital. Her life, care, and treatment would be forever changed from that day forward.
Sydney has endured many surgeries at Nationwide Children’s including reconstructive plastic surgeries, ears, nose and throat (ENT) surgeries and orthopedic surgery. She is an outgoing, confident girl who does not let her diagnosis define her.
“Nationwide Children's Hospital has become like a second family to us. The team of people caring for Sydney have literally changed her life and opened doors of opportunities for her that seemed impossible when receiving her diagnosis. From her surgical to orthodontic care, to staff, nurses and support personnel – everyone is committed to giving our daughter top-notch treatment,” says Stacey, Sydney’s mother.
Sydney loves Batman, writing, drawing, reading and spending time with her family. She loves nature and enjoys going to local metro parks and the zoo. Sydney is a resilient child who loves life, is a great student and works hard in school.
“Sydney has gained confidence, and received support and compassion at every turn of her treatment. She has grown into a child that has no fear in telling her story and her strength inspires others daily,” says Stacey.