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: Hypoplastic Left Heart Syndrome, Protein Losing Enteropathy (PLE)
Hometown: Dublin, Ohio
The day after Charlie was born, his pediatrician found something wrong with his heart. Charlie was transferred to Nationwide Children’s where he was diagnosed with Hypoplastic Left Heart Syndrome. His parents learned that in order for their son to survive, he would need three open heart surgeries before he was three years old. They were terrified. However, when Dr. Mark Galantowicz came to talk to them, they immediately felt confident in his abilities to take good care of their son.
Charlie had his first surgery at five days old and his second at five months old, recovering from both without complications. Over the next several months, his parents saw a special, brave little soul emerging. A few months before turning three, he had his third surgery.
Here at Nationwide Children’s, we are a leader in pediatric care. We offer cardiology services, cardiothoracic surgery, and everything else you would expect to find at a nationally-renowned heart center.
Charlie did great after his third surgery, and things were pretty normal for quite a few years. Then, in the fall of 2013 when Charlie was nine, he was diagnosed with Protein Losing Enteropathy (PLE). PLE causes proteins in the body to leak and as a result, patients experience fluid retention as well as growth, immune, and digestive issues. Charlie battled acute symptoms of PLE for over a year, but is now symptom free and considered to be in “remission.” Although small for his age due to PLE, Charlie is a gifted student with great friends and was the only seventh grader to make the middle school golf team last year. He even made it to the middle school golf championships, with only six golfers selected to participate.
“Nationwide Children’s means everything to us. They have given Charlie the chance to have a normal, happy life,” says Charlie’s mom Donna.
Charles means “Brave” and his middle name, Vincent, means “Warrior.” Charlie has proven time and time again, that he is a Brave Warrior and so much more.
Diagnosis: Hypertrophic Cardiomyopathy
Hometown: Pickerington, Ohio
During a routine sports physical in June 2016, Cole’s doctor heard a heart murmur and immediately referred him to Nationwide Children’s Hospital. Cole was diagnosed with Hypertrophic Cardiomyopathy (HCM), a disease where the heart muscle becomes abnormally thick, making it difficult for the heart to pump blood. For active 12-year-old Cole who played all sports, this was a devastating diagnosis.
But Cole isn’t one to give up. Within one month of his diagnosis, Cole took up his doctor-approved, new sport of choice – golf. Prior to July 2016, Cole had never even picked up a golf club. He worked hard at learning the game and tried out for the school golf team one month later. Of the eighteen kids who tried out, Cole was one of the nine who made the final cut.
“Nationwide Children’s is Cole’s lifeline. I believe Cole’s resilience is due in part to his team of doctors and nurses offering compassion, hope and understanding, says Cole’s mom Colleen.”
The Heart Center at Nationwide Children’s consolidates all cardiology and cardiothoracic surgery services into a one comprehensive location for care, education and research. We are prepared to treat patients from 0 to 100 years of age with experts in all areas of surgical and medical subspecialties.
After experiencing two cardiac arrests, Cole now manages his HCM with an Implantable Cardioverter-Defibrillator (ICD) placed under his skin, which helps detect and regulate abnormal heartbeats. Cole doesn’t let his disease stop him from living life. He is in all advanced classes in school, maintains honor roll status and finished the 2017 school golf season with the best average on his team for nine-hole competitions and second best for 18. He enjoys hanging out with his friends and attending high school football games.
Diagnosis: Cerebral Palsy
Hometown: Lewis Center, Ohio
EmmeClaire was adopted from China in the summer of 2012 when she was 15 months old. Emme’s paperwork did not have any details on her diagnosis beyond “delayed.” When her family arrived in China and met her, they found out that Emme was unable to walk or crawl. Upon arriving home, Emme was seen at the Nationwide Children’s Hospital Adoption Clinic where she quickly started receiving physical therapy services. In February of 2013, she was diagnosed with Cerebral Palsy.
After many hours of therapy and lots of hard work – Emme began walking on her own just one year after she arrived home. She also began speech therapy and was progressing well. As her mother, Beth says of the experience, “We were finally seeing her spitfire personality.”
The cornerstone of our Comprehensive Cerebral Palsy Program is the Interdisciplinary Team Clinic. Our families see a variety of specialists in a single clinic visit. These include Neurodevelopmental Pediatrics; Physical Medicine & Rehabilitation; Orthopedics; Nursing; Physical, Occupational, and Speech Therapy; and Nutrition.
In June 2014 while in Maryland on a family vacation, Emme had her first seizure, followed by several requiring hospitalizations. After successful treatment, EmmeClaire has now been two-years seizure-free.
“Emme has overcome so much in her short seven years. We have been impressed with the accessibility directly to the doctors for guidance, the time we have been provided to ask questions and the compassion they have all shown for Emme,” says Beth.
Emme loves being outside and playing, no matter the time of year or season. She loves books and is a great reader. This year she is in Kindergarten and loves being a Daisy Scout. She is excited to start her second season with the New York Yankees with the Central Ohio Miracle Baseball League.
Diagnosis: Type 1 Diabetes
Hometown: Grove City, Ohio
One week before her fifth birthday, Isla was diagnosed with Type 1 Diabetes. It came as a complete shock to her family.
The week of Thanksgiving, Isla’s family noticed her doing some out-of-the-ordinary things. She went from being a picky eater to eating everything off her plate at every meal. The day after Thanksgiving included a trip to Nationwide Children’s Hospital where Isla was tested and then diagnosed with Type I Diabetes after an incredibly high blood sugar reading. Isla was admitted right away, and her family spent the weekend in the hospital learning how to take care of their little girl’s new challenge.
“It was so overwhelming for us, but we were so thankful to have the support of our whole family, friends, church and hospital backing us up and wanting the best for Isla and our family. Diabetes is an overwhelming and lifestyle-changing disease, but everyone at Nationwide Children’s made sure we went home confident and equipped to handle this new way of life for Isla,” says Isla’s mom, Hollie.
Our Endocrinology team is equipped to diagnose and treat your child’s endocrine disorder. We offer a variety of approaches to diabetes therapy that is customized to family needs. Our approach is proactive medically, educationally and psychosocially, in order to identify needs early to prevent problems from developing.
Isla is a tough little girl who endures five to six shots every single day. Today she is six years old and is in started Kindergarten. She loves playing with her friends, going to the zoo, swimming, dancing, crafts and all-things Disney princesses.
Diagnosis: Hemophilia, Crohn’s Disease
Hometown: Glendale, West Virginia
Soon after Jackson was first born, he started experiencing a lot of bruising and had a really hard time healing. At the age of two, Jackson was diagnosed with Hemophilia. Hemophilia is an inherited blood disorder that causes the blood to not clot very well and can result in increased bleeding even with a slight injury. There is no cure for hemophilia at this time, but by using the medicine and treatment available regularly, the disease can be kept in check.
“When you first hear a diagnosis like that you always have fears for the worst and fears of what he can’t accomplish or what he can’t do normally like any other child,” says Jackson’s mom Gretchen. We’re thankful we have this place. There’s constantly something on the horizon that the doctors are keeping abreast on,” says Gretchen.
Jackson has been coming from West Virginia for treatment at Nationwide Children’s ever since his diagnosis. Our Comprehensive Hemophilia and Bleeding Disorder Treatment Center is on the forefront of cutting edge advancements in blood disorders.
When Jackson was six, he was also diagnosed with Crohn’s Disease. Despite his diagnoses, Jackson is an incredibly active, smart and outgoing 12-year-old kid. He loves playing golf and basketball. When Jackson was seven years old, he’d tell his mom how much he wanted to be a doctor, because he could see how they helped him and others at Nationwide Children’s Hospital.
“Jackson is the strongest kid I know. Jackson has a wonderful ability to put his Hemophilia in perspective in relation to what other children, who are fighting much more serious medical conditions, have to endure. We are so fortunate that there are medicines to treat his conditions and help him live a very full life. We are truly blessed,” says Gretchen.
Diagnosis: Type 1 Diabetes
Hometown: Mansfield, Ohio
Not every 6-year-old can tolerate getting pricked by a needle multiple times a day. It’s a good thing Jagger isn’t your average 6-year-old. He’s tough. Jagger has Type 1 Diabetes and takes insulin every day through a needle to keep his blood sugar levels in a healthy range.
In the fall of 2016, had a scheduled check up to “rule out anything serious,” as his family noticed he had been making frequent bathroom visits. His primary care provider sent him to Nationwide Children’s right away because his blood glucose level was at 400. For kids, healthy glucose levels are supposed to be around 100.
“Nationwide Children’s has been so helpful in this journey. From the 2-night educational stay where we learned our new way of living, to the quick responses when we just aren’t quite sure what to do and the continued education that is so wonderful and comforting. In 2 short months, thanks to the hospital we are able to comfortable care for our son and keep him safe,” says Ashley, Jagger’s mom.
Diabetes is a major focus of the Endocrinology Section at Nationwide Children’s Hospital. We have a multidisciplinary team that works together to care for patients and families affected by the disease. Our goal is to empower families to successfully manage diabetes at home in order to provide as normal a life as possible for patients with diabetes.
Jagger is an enthusiastic kid who loves being silly and running around. He loves playing games like Zelda, Minecraft, Terraria and Pokémon. And, even at such a young age, Jagger already has a true passion for drawing and creating art – and is quite good at it, too! Recently he got into modeling and has done shoots with Finish Line for Macy’s, JoAnn Fabrics and a commercial for Rite Rug.
Diagnosis: Mature Teratoma Tumor
Hometown: Glenford, Ohio
Maddi was living the normal life of a high-schooler, when just days after her seventeenth birthday her chronic headaches worsened and became debilitating. While driving to a normal doctor checkup, she experienced vision loss while driving on a major highway. Her mom then took her to Nationwide Children’s Hospital where first her symptoms were diagnosed as another chronic migraine headache. But after further testing, scans revealed devastating news – Maddi had a mass in her brain between her pituitary gland and brain stem.
To aggressively fight the tumor, Maddi endured three surgeries, including an 11-hour brain operation. Maddi experienced memory loss, along with many other symptoms.
In close collaboration with Nationwide Children’s , nationally-ranked Neurology and Neuro-Oncology services, Craniofacial Center, and nationally-accredited Pediatric Inpatient Rehabilitation Program, we care for patients from birth to age 21, and select adults with congenital neurological disorders. We provide initial consultation, surgery, post-operative care and rehabilitation.
For some, an incredibly difficult experience like this would cause discouragement or bitterness – but not for Maddi. Maddi’s experiences have driven her toward a desire to make a difference in the lives of others. She is closely involved with local nonprofit organizations and actively raises money for Nationwide Children’s Hospital.
This past December, Maddi created “The Snowflake Movement,” as a way to spread holiday cheer to inpatients at Nationwide Children’s Hospital during the winter months and holidays. Maddi coordinated with schools from all over Central Ohio to make paper snowflakes for the windows of patient rooms of the hospital. Due to her efforts, over 4,500 beautiful snowflakes covered the windows of the hospital.
“I like to give back to others. That’s my passion. I’m always thinking of ways to put smiles on others’ faces,” says Maddi.
Diagnosis: Crohn’s Disease
Hometown: Powell, Ohio
Nadia was diagnosed with Crohn’s disease at the age of six. Since then she has undergone numerous tests, scopes and colonoscopies, along with inpatient stays. She and her family’s first 18 months after her diagnosis included a roller coaster of emotions, tests, blood work, more tests and lots of learning.
Many people who meet Nadia look at her and assume she is fine and healthy, without knowing the battles she faces daily. In her mother Holly’s words; “that is both the blessing and the curse of an invisible disease.”
At the Division of Gastroenterology, Hepatology and Nutrition, our diagnostic and therapeutic capabilities are some of the most advanced in the world. From the child with rumination syndrome or gastroparesis to those with food allergies or constipation, we are blazing the trail to best possible outcomes for our patients.
“The disease is not easy, nor are the medications to help treat it, but with the help of our Nationwide Children’s Hospital team we are doing the very best we can. No one expects when they decide to become a parent that there will be a non-curable disease that ‘pops up.’ Nationwide Children’s is a partner in this lifelong journey with our daughter,” says Holly.
Nadia receives monthly infusions to help control the disease. She is very brave and is the happiest, most joy-filled little girl. Nadia’s says that if she could have any wish, it would be that “no kid has to be sick or in the hospital.” She enjoys life like other 8-year-olds and enjoys school, swimming, tennis, Shopkins and her American Girl dolls. Nadia says, “I just know one day there will be a cure,” and plans on working on one while attending Northwestern when she’s older.