One amazing marathon. 26 inspiring stories. A whole new way to give. See how your children's hospital has had an impact on their lives. Thank you to our 2014 Patient Champions. Meet them here.
Mile Theme: Hollywood
Diagnosis: Transposition of the Great Vessels
Hometown: Westerville, Ohio
It is amazing how much can happen in a year or less. Little Nixon Brower wasn’t even born yet when his journey with Nationwide Children’s Hospital began. In December 2012, a fetal echocardiogram confirmed that Nixon had Transposition of the Great Vessels, a condition where the arteries carrying blood away from the lungs and heart are switched causing decreased oxygen in the blood. Without corrective surgery, the life expectancy for children with this condition is only months.
On the day he was diagnosed, Nixon’s parents met his cardiologist at Nationwide Children’s, Dr. Cliff Cua. He explained the condition, the options for courses of treatment, and answered many questions in a long, emotional meeting. In the subsequent months, there were follow-up ultrasounds, fetal echocardiograms, and meetings to discuss what would happen after Nixon arrived.
When Nixon finally did arrive in May 2013, he was delivered at OSU Wexner Medical Center and, after a few hours of prepping, was escorted to Nationwide Children’s Hospital where he entered the Cardiothoracic Intensive Care Unit (CTICU) to await surgery. After around-the-clock observations, tests, and blood work, it was established that Nixon, at approximately 36-hours old, was strong enough to undergo his life-saving surgery. Eight hours later, Dr. Mark Galantowicz, Chief of Cardiothoracic Surgery and Co-Director of The Heart Center at Nationwide Children’s Hospital, who performed the surgery, announced to Nixon’s parents that it was a resounding success. Nixon spent the next 9 days recovering in the CTICU and the Cardiac Step-Down Unit.
The Heart Center at Nationwide Children's Hospital has expertise, compassion and the most advanced technologies. As the leader in pediatric care, we offer cardiology services, cardiothoracic surgery, and everything else you would expect to find at a nationally-renowned heart center. Pediatric and adult patients with all forms of congenital heart disease and acquired cardiomyopathy have access to world-class diagnostic, treatment and research facilities. And all locations are staffed by pediatric experts who provide patients and their families with innovation and advancements not found elsewhere.
As Nixon’s mother, Kristin, says “Nixon entered Nationwide Children’s Hospital a few hours-old baby boy with a life-threatening heart defect and left with a group of lifelong heroes, friends, and guardian angels. Between the nurses, physicians, surgeons, and support staff, we could not have been more blessed than to have received the care we did from the staff at Nationwide Children’s. He is now a happy, vibrant, and, most importantly, healthy one-year old boy who lights up every room he enters. Not only did Nationwide Children’s save Nixon’s life, they afforded him the opportunity to meet his heroes only hours after he was born.”
In less than one year, Nixon was born and had life-saving heart surgery. More than that, he has already been golfing, “eats Cheerios like a man,” loves his doggies, and knows he wants to be a Duke Blue Devils basketball player. If he can do all that in such a short amount of time, imagine how inspiring he will be as he cheers on the marathon runners and walkers as they pass through his special mile.
Mile Theme: Valentine Mile
Diagnosis: Spina Bifida
Hometown: Columbus, Ohio
Grace's first visit to Nationwide Children’s Hospital was before she was born. A fetal MRI revealed that she had myelomeningocele, the most common and severe type of spina bifida. Spina bifida is neurological condition that can cause a portion of the spinal cord and the surrounding structures to develop outside, instead of inside, the body. According to Grace’s mom, Lauren, “…we were comforted by the help and guidance of Nationwide Children’s staff long before her birth.”
Babies with spina bifida need complex, life-long care. Grace began her journey on Valentine’s Day 2008. Immediately after she was born, she was transported to Nationwide Children's Hospital and had her first surgery 5 hours later. Now, at the age of 6, Grace has had 18 surgeries and spent over 125 days recovering in the hospital. She has worked incredibly hard in the last 6 years to walk in her walker and roll in her wheelchair with strength and endurance, and to become as independent as she can.
Last fall, just 4 days after starting Kindergarten, Grace experienced some complications which resulted in a 7-week stay at Nationwide Children’s. Her mom says, “She has amazed us all with her spirit and fight to recover with the help of Nationwide Children’s home therapists (PT, OT, and Speech), nurses and her doctors.” Grace is working hard to wean off her ventilator and is hoping the tracheotomy is not permanent – because she really “…can’t wait to get back to school!”
Grace receives care from throughout Nationwide Children’s including the Myelomeningocele Clinic, Neurosurgery, Neurology, Pulmonary Medicine, Urology, Ophthalmology/Eye Clinic, Nephrology, Physical Medicine and Rehabilitation, Orthopedics, Psychiatry, Psychology and Ear Nose & Throat Services. Her parents know that they will be spending a lot of time at Nationwide Children’s Hospital. “When we walk into Nationwide Children's, we feel like we are walking into a home away from home; we see a lot of friendly and familiar faces and we don't feel like we are dealing with these challenges alone. No one wants to spend that much time in the hospital. But if you need to, you want to feel that kind of love, care and support - and that is what we feel when we come to Nationwide Children's.”
While Grace has faced many complicated and serious challenges in her 6 years, she has done so with a joyous and positive attitude. She is an inspiration to anyone who knows her story. Please join Grace as she cheers on her mother, Lauren, who is running the ½ marathon this year.
|This mile is proudly sponsored by:|
Mile Theme: Witch/Halloween
Hometown: Tiffin, Ohio
In the 26th week of her pregnancy, Heather Gaietto was admitted to Riverside Methodist Hospital for an emergency C-section. Charlee entered this world at 2.6 lbs and was admitted to Nationwide Children’s Hospital Neonatal Intensive Care Unit at Riverside. She was placed on a ventilator, given a feeding tube and faced many of the other challenges that were the result of her prematurity. Among these were anemia; broncho pulmonarydysplasia, which causes impaired lung function; torticollis, which is a stiff neck or neck pain that makes it difficult for kids to turn their heads; plagiocephaly, a flattened area on the head which required Charlee to wear a helmet: and a tethered spinal cord, which is a type of birth defect that causes the spinal cord to get stretched as a baby grows which can cause leg weakness and problems with incontinence. After a 53-day stay at the hospital, Charlee was finally discharged home.
With more than 190 beds dedicated to the care of newborns, Nationwide Children's Hospital provides the most comprehensive care for newborns in the region. We have partnered with local adult hospitals to extend Children’s intensive and specialized care to Riverside Methodist Hospital, Grant Medical Center, Doctors Hospital, Dublin Methodist Hospital and Mount Carmel St. Ann's. Having our units directly within these adult care labor and delivery hospitals enables us to provide immediate attention to newborns in need of critical care.
According to Charlee’s mother, "Nationwide Children's Hospital is an amazing home away from home where we were treated like family from so many special, caring people. It didn't matter where we were, in the NICU, the Ronald McDonald House, on a shuttle, in the cafeteria, or working with the doctors and nurses, everyone has a very special role they play in helping families through the most difficult times in their lives! Nationwide Children's has meant security in world of uncertainties. The minute you enter the hospital you have a feeling of trust and renewed hope that only this amazing place can offer!"
Today, Charlee is nearly 3. She is bright, thriving, and very active. She can walk on her tip toes, jump and swim. One of her favorite things to do is talk. And one of her favorite things to say is “Maw Maw, run faster!” At Charlee’s mile, you will hear her singing out those words as she cheers on her grandma, dad and sister.
|This mile is proudly sponsored by:|
Mile Theme: Cleveland Cavs
Diagnosis: Elevated Hemoglobin A1c, Anemia
Hometown: Westerville, Ohio
Imagine being a kid who likes to play football one year, and the next you can hardly participate in any activities at all. That is what happened to I’shallar (Osh) Bryant. He was 12-years old when he came to Nationwide Children's Hospital because he had been suffering from a sports injury from the year before.
While Osh was undergoing functional therapy at Nationwide Children’s Hospital to build back strength in his knee, he was dealing with other issues. During the time when he was not able to be active, he had put on a lot of weight. His family knew that they needed help, but they really weren’t even sure if such a thing existed. It does. And it’s called the Healthy Weight New U Program at the Center for Healthy Weight and Nutrition at Nationwide Children's Hospital. When Osh’s family learned about the healthy weight program, they also realized that they needed more help than they had originally thought. Osh was diagnosed with elevated hemoglobin A1c (a precursor to diabetes) and anemia. Osh’s mom, Linda, says “I was scared and worried about my son's health and future. We needed real help and fast. Boy did we get top quality help, help I never knew could exist. The staff at Nationwide Children’s helped my son and my entire family.”
Being overweight increases the risk for a number of serious health conditions. Chronic diseases, such as Type II diabetes, that are common in overweight adults, are now being diagnosed with increasing frequency in children. Children who are overweight are also at risk for developing asthma, cardiovascular disease, hypertension, sleep apnea, and psychosocial issues due to lowered self-esteem The Center for Healthy Weight and Nutrition at Nationwide Children’s offers a comprehensive approach to weight management in children, including programs for both prevention and treatment.
“No mom wants to see her child struggle or hurt. It just broke me down inside to know that he was unhappy. Children's saved our lives,” says Linda.
Since being in the Healthy Weight New U Program at Nationwide Children’s Hospital, Osh has been able to play 8th grade football for Heritage Middle School. He also ran the Cap City 5K along with a small group of other kids from Nationwide Children's. Osh attended several football camps this summer and was also invited to attend the Football University. He will be attending Westerville South High School this year and has been conditioning and lifting weights with his team.
Osh is super excited about his recovery and his journey through the program. He is grateful to be able to play the sport he loves and keep moving toward his dream job - with the NFL. Osh is already in a league of his own with his determination and family support. Please join him as he cheers on the runners and walkers as they pass through his special mile.
Mile Theme: Puzzles: Autism Awareness
Hometown: Reynoldsburg, Ohio
Proving that precious things come in small packages, Tyler Lutz was born at 24 weeks weighing only 1lb, 7 oz. He spent the first 133 days of his life in the Neonatal Intensive Care Unit at Nationwide Children's Hospital. In spite of his 10% odds of survival, the surgeries he needed, and the severe complications related to his premature birth he went home on that 134th day.
When Tyler was 2, he was diagnosed with an Autism Spectrum Disorder (ASD) and has been a patient of the Center for Autism Spectrum Disorders at Nationwide Children’s Hospital ever since. He receives psychology and behavioral medicine care for Attention Deficit Hyperactivity Disorder (ADHD) and Neurology for seizures. He also makes yearly visits to Ophthalmology. Today, Tyler is a happy, loving 10-year old who loves being with his family and 8-year old brother, Drew.
Autism Spectrum Disorders are a group of eurologically based developmental conditions that are characterized by delays in three areas: language and communication, socialization, and repetitive and ritualistic behaviors. These are spectrum disorders, and for each child the severity of symptoms in each area can range from mild to severe. It is estimated that ASDs occur in 1 in 68 children. Structured, comprehensive interventions can significantly improve a child’s quality of life.
The Center for Autism Spectrum Disorders and the Child Development Center at Nationwide Children’s Hospital provide comprehensive, multidisciplinary care focusing on evidence based treatment, education, research and advocacy for children with the diagnosis of an ASD. Our mission is to provide assistance to every child and family affected by ASD who is in need.
Tyler’s mom, Kelly, says Nationwide Children’s Hospital “… means everything to us! There is no doubt about it. Without Nationwide Children’s, Tyler would not be here today. Words cannot explain how fortunate and grateful we feel for having access to Nationwide Children’s network of services. The life-saving care he received in the NICU and continuous care with all the dedicated specialists over the past 10 years has shaped him into the awesome kid that he is!”
Tyler would give you a whole list of the things he finds awesome: chocolate chip pancakes or anything chocolate, breakfast sandwiches, playing outside, going to the beach, pool, and waterparks, playing soccer and basketball, and enjoying special needs dog agility classes and horse therapy. Tyler also loves animals. And just as he came into this world - precious and small, so too are his 2 favorite animals, his miniature dachshunds, Abby and Chip.
Please join Tyler at his special mile where he will be cheering on family, friends, and everyone else who is participating in the marathon to benefit Nationwide Children's Hospital.
|This mile is proudly sponsored by:|
Mile Theme: Minecraft
Diagnosis: Type 1 Diabetes
Hometown: Galena, Ohio
Roman’s parents were devastated when he was diagnosed with insulin dependent diabetes mellitus (IDDM), also known as Type 1 diabetes. His mother, Melissa says, “As a parent, it is your job to protect your child, to keep them safe and out of harm’s way. But what happens when the enemy is your child’s own body?”
Diabetes symptoms include increased urine production. As a result, the patient feels thirsty. And the glucose lost in the urine carries calories out of the body leading to weight loss and increased thirst. If the high blood glucose is not treated adequately, then glucose starts attaching to proteins in the body and causes organ dysfunction. This particularly affects the eyes, kidneys, heart, blood vessels and nerves. Inadequate insulin levels can result in life-threatening illness and even coma. The best way to completely prevent these problems is by keeping the blood glucose at normal values. For Type 1 diabetes, replacing the missing insulin with either an insulin pump or multiple insulin injections each day is the fundamental therapy. Modern insulin therapy allows flexibility in size and timing of meals.
The Diabetes Center at Nationwide Children's Hospital has a multidisciplinary team that works together to care for patients and families affected by diabetes.
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. Roman is 8-years old now and doing great. With the aid of an insulin pump, he is thriving. Melissa has been empowered too, “Nationwide Children's Hospital is our extended family. Having a child with a chronic illness, we have come to know and love the diabetes team. This experience has given me the opportunity to give back to the Nationwide Children's community. I have created a yoga therapy based program at the hospital for parents of children with Type 1 diabetes.”
Roman is not only a patient champion for this year’s Nationwide Children’s Hospital Columbus Marathon, he is also his mother’s champion. “... every day Roman faces his adversity with his head held high and a smile on his face.” Join Roman at his special mile where he will inspire and empower the marathon participants.
Mile Theme: American Girl
Diagnosis: Profound Hearing Loss
Hometown: Columbus, Ohio
Do you like puppies? Six-year-old Elena Miller does.
Can you imagine the sound of a puppy playfully sniffing in your ear when he is cuddling you? Well, Elena doesn’t have to imagine that sound anymore, because now she can hear it with her own ears.
Elena Miller was born deaf. At 10 months, she received surgically implanted bilateral cochlear implants. During the first two years of her life, she underwent 6 surgical procedures followed by intensive speech therapy and audiology.
Once a child has been diagnosed with sensorineural hearing loss, the child’s family is often faced with questions and decisions they do not feel equipped to address. The Hearing Program at Nationwide Children’s Hospital helps patients and their families through a multidisciplinary team approach. The team of experts includes a pediatric otolaryngologist specializing in hearing loss, advanced practitioner nurse, audiologist, speech-language pathologist, social worker and registered nurse.
Perhaps Elena’s mother, Angela, said it best, “We have experienced a miracle in Elena and she lives a very full and blessed life because of the technology of cochlear implants and the wonderful care Nationwide Children’s Hospital provides. She truly does have a very bright future ahead!”
And so does her puppy, Snickers.
As the runners and walkers pass her special mile, Elena will be cheering loudly on behalf of all the kids who have been diagnosed with hearing impairments.
Mile Theme: Camouflage
Diagnosis: Arthrogryposis Multiplex Congenita
Hometown: Reynoldsburg, Ohio
She may only be 9-years-old, but Rayne has faced more challenges than many adults three times her age have. She is an inspiration to many and has always had one goal in mind since she was able to talk - that someday she would be able to walk on her own.
Rayne was born with Arthrogryposis Multiplex Congenita (AMC), which involves a variety of non-progressive conditions that are characterized by multiple joint contractures (stiffness) and involves muscle weakness throughout the body. The name, derived from the Greek, means “curved or hooked joints.” The most common type of arthrogryposis is called amyoplasia in which the hands, wrists, elbows, shoulders, hips, feet and knees are affected. In more severe types, every joint can be affected including the jaw and spine. This is a rare disorder occurring in 1 out of every 3,000 live births; and the incidence of true amyoplasia occurs in 1 out of every 10,000 live births.
Even though the condition is rare, all of the Pediatric Orthopedic Surgeons at Nationwide Children’s Hospital are trained and comfortable treating children with arthrogryposis. Patients are usually referred to one of our orthopedic centers within 2-4 weeks of birth to perform a full history and physical exam and to determine if any early testing or treatments need initiated. The multidisciplanry approach to treatment includes the genetics team, therapy teams and other specialties depending on their individual issues.
Leslie, Rayne’s mother, says, “The exceptional care that we have received within Orthopedics is something words cannot explain. Not only have we had the opportunity to professionally meet a wonderful team of physicians, nurses and staff. They have become family friends. This means more than the world to our family. Rayne has grown as an individual and with each appointment, Rayne continues to shine…”
Rayne has undergone many surgeries to help correct the contractures in both her upper and lower extremities. Within the last year, her dream came true. Following bilateral hip surgery and extensive physical therapy, Rayne was able to walk on her own.
Like the runners and walkers in today’s event, Rayne is also an athlete. She loves to play basketball and has been competing on the Paralympic Swim Team. When she grows up, she wants to be an Olympic athlete and lawyer. For now, she will be an inspiration to all the participants who pass through her special mile.
Mile Theme: Hearts
Diagnosis: Congenital Heart Defect
Hometown: Logan, Ohio
Sophia Kline is a healthy and happy 9-year-old girl who enjoys dancing, doing gymnastics, jumping on the trampoline, and playing softball, basketball and volleyball. This same young girl would not be with us today if it weren’t for the open heart surgery she had when she was 14-months old.
Sophia required a mitral valve repair for severe regurgitation two months past her first birthday. She has been doing great since and visits her cardiologist at Nationwide Children’s once a year since the surgery.
The Heart Center at Nationwide Children's Hospital provides pediatric and adult heart patients with outstanding diagnostic, treatment and research facilities. At Nationwide Children’s Hospital, patients and families experience innovation and advancements unlike any other institution. Under Co-Directors Timothy Feltes, MD, FACC, Mark Galantowicz, MD, FACS, and John Cheatham, MD, FAAP, FACC, FSCAI, The Heart Center consolidates all cardiology and cardiothoracic surgery services into a comprehensive model for family-centered care and convenience. One, comprehensive location for care, education and research. We are prepared to treat cardiac patients from 0 to 100 years of age with experts in all areas of surgical and medical subspecialties.
Each of the 13,443 patient visits at the Heart Center at Nationwide Children’s last year came with a unique story. Sophia’s story began with fatal condition and has taken this 9-year old girl to today where she is a happy and healthy Patient Champion for the Nationwide Children’s Hospital Columbus Marathon. Join her at her special mile as she cheers on the marathon participants, especially her grandfather Terry, and her friend and distant relative, Andrew.
|This mile is proudly sponsored by:|
Mile Theme: Neon
Diagnosis: Head Injury
Hometown: Dublin, Ohio
It was a beautiful fall day in 2012. She was doing what she loved to do – practicing with her high school varsity soccer team. And suddenly, her world completely changed.
When Colette Frommeyer was hit in the head by a stray soccer ball she sustained a concussion. The road to recovery was a very long and difficult one. Following the incident on the soccer field, Colette suffered from daily headaches, neck pain, nausea, vomiting, dizziness, sensitivity to light and noise, and difficulty concentrating. More than this, she was no longer able to do the things she loved to do: play soccer, socialize with friends, or attend school. What Colette was able to do was attend her biweekly visits with Dr. Reno Ravindran at Nationwide Children’s Hospital Sports Medicine Concussion Clinic.
The Concussion Clinic at Nationwide Children’s Hospital offers what an adult facility cannot: the expertise of pediatric sports medicine specialists and physical medicine and rehabilitation specialists, along with neurologists, neurosurgeons, radiologists, neuropsychologists, physical therapists, and athletic trainers to best manage pediatric concussions and help student athletes reach their full potential.
“Nationwide Children’s was at my side during my whole recovery and continues to be with me as I regain physical and cognitive strength. They are like my family who comforts, supports, and motivates me to be the best person I can be.”
Join Colette as she cheers for all those participating in the marathon to benefit Nationwide Children’s Hospital, her “…beacon in the darkness of recovery.”
|This mile is proudly sponsored by:|
One special mile on the Nationwide Children’s Hospital Columbus Marathon, Mile 11, is dedicated to the Angels who are no longer here with us. Families coming together to support one another, share memories, and celebrate the days they shared with their children will make this mile an experience that gives this marathon a new meaning.
When you run through the Angel Mile, run for those kids who have passed, and be inspired to live every day to the fullest in honor of those who have already finished their race.
|This mile is proudly sponsored by:|
Mile Theme: Shine On
Diagnosis: Severe Facial, Mouth and Head Injuries
Hometown: Dublin, Ohio
The day could not have been more perfect. The sun was shining. The air was filled with the scents of early autumn. And 7-year-old Alex was happily riding her bike with her family. Little did they know that the delightful day would abruptly turn to a tragic one.
As Alex was going down a steep hill, she suddenly lost control of her bike. Unable to stop, she plummeted, face first, into a cement wall. She was rushed to Nationwide Children's Hospital with severe facial, mouth and head injuries, and cuts on her arms and legs. All of her permanent front top teeth had been pushed completely up into her gums. Alex required over 60 stitches inside her mouth and on her face. As frightening as all of this was, the worst worry was wrapped around waiting for test results concerning the possibility that Alex had incurred brain damage.
Alex was in the hospital for a week. She was unable to eat, drink or talk because of the facial swelling and bleeding. She had many follow up dental and periodontal procedures. Her orthodontist collaborated with Nationwide Children's Dentistry department. The innovative techniques they used to save her teeth have since been utilized to help other children with similar facial and mouth injuries.
Alex’s life was saved that fateful day because she wore a helmet. Even though the accident left it split open, it had done its job. The following healing days were filled with reassuring and fun care provided by Alex’s team of doctors and nurses. Alex especially loved one doctor who would do funny tricks to entertain her whenever she would come to check in on her. Another bright spot during those days was when several players from The Ohio State University football team paid a visit. When not in the throes of treatments or procedures, Alex also enjoyed being able to be a kid again and visit a play room with art, toys, and fun things to do.
Today, Alex is a 14-year-old young lady. Her facial scars have faded. Her smile, with all of her original teeth, is radiant. Alex’s family is grateful for the bike helmet and for the doctors and nurses who were able to bring the smile back to their sweet girl.
Mile Theme: Tyro's Tinkerbells- Faith, Trust and Pixie Dust
Diagnosis: Tyrosinemia 1
Hometown: Dayton, Ohio
It’s all about timing and hope. All babies born in Ohio are tested for serious diseases and disorders. Avery was born within weeks of Ohio passing a bill to add Tyrosinemia Type I to the newborn screening program. She was the 5th person in Ohio to be diagnosed with this disease and the first child to be diagnosed before any major complications had set in.
Tyrosinemia Type I is a genetic metabolic disease which affects about 1 person in 100,000 in the world. It prevents the body from being able to break down protein in a healthy way. At the moment, there is no cure, but that doesn’t stop 4-year-old Avery from playing outside, swimming and jumping on the couch.
One year ago, Avery’s sister, Leighton, was also diagnosed at birth with Tyrosinemia Type I. Their parents, Katie and Matthew, are grateful for the staff and team of doctors at Nationwide Children’s Hospital who have become like family to them as well as champions of hope that a cure will be found for these little ladies in their lifetime.
Avery has many friends running in the marathon. Please join her in celebrating these champions of hope.
Mile Theme: Under the Sea
Diagnosis: Cerebral Palsy
Hometown: Canal Winchester, Ohio
Addy’s parents loved her long before she was born. Three years to be exact. After the devastating loss of their 3-month-old son, Ethan, to sudden infant death syndrome, Yvette and Victor began the long journey of trying to conceive again. Finally they became pregnant with twins.
Fourteen weeks into the pregnancy, complications arose and Yvette and Victor were informed that the amniotic sac of "Twin B" had ruptured. The baby’s prognosis was bleak, as doctors were gravely concerned about lung development and the twin's ability to survive the remainder of the pregnancy as well as delivery. After weeks of strict bed rest and regular ultrasounds that continued to show a faint heartbeat for “Twin B,” an emergency C-section was performed at 28 weeks.
Addy’s brother, Evan, only weighed 2.5 pounds, but was breathing on his own. Weighing less than 2 pounds, Addy was so tiny she could just about fit into her Mom’s hand. She was rushed to Nationwide Children's Hospital where she received the care that kept her alive.
Now, at 8-years old, Addy continues to get her care at Nationwide Children’s for cerebral palsy. The integrated Cerebral Palsy Program at Nationwide Children’s Hospital is a comprehensive, multi-disciplinary clinic. Families can see a variety of specialists in one clinic visit. The vision of the program is that every child with cerebral palsy will reach his/her full potential physically, cognitively and socially.
Addy is certainly not letting cerebral palsy stop her. She likes riding horses, playing with her dolls and stuffed animals, and most of all playing with her siblings.
Join Addy as she cheers on her favorite runner - her father.
|This mile is proudly sponsored by:|
Mile Theme: Madagascar-"Move it, move it"
Diagnosis: Traumatic Brain Injury
Hometown: Johnstown, Ohio
In the words of Devon’s father, “On October 7, 2013 around 3:30 p.m. our lives were changed.” He had just picked his sons up from school to take them home when a young driver crossed over into their lane and hit them at 55 mph.
Devon was life-flighted to Nationwide Children’s Hospital with a fractured skull, severe traumatic brain injury, multiple lacerations and broken and fractured bones. He was on life-support for five weeks. During the course of his recovery he has undergone multiple surgeries to repair broken bones, save his arm, and treat bilateral subdural brain bleeds.
In the beginning, the fear was that Devon would not be able to survive all of the complications of his injuries. In time, when Devon was finally able to breathe on his own, the uncertainty extended to whether or not he would ever be able to walk, talk or show emotion.
On January 23, nearly 110 days after the tragic accident, Devon was discharged home. He still relies on a feeding tube because he is not able to take food by mouth. And he has been diagnosed with Cyclic Vomiting Syndrome, which means about every two weeks he has an episode when he vomits hundreds of times. Devon continues to face many other challenges as well, but he has already beaten the odds. Today he is walking, reading, doing math and continuing to improve as he continues to receive various forms of therapy and care.
Nationwide Children's Hospital houses Ohio’s first Level I Pediatric Trauma Center and is dedicated to providing trauma care for injured children and adolescents. The program is involved in all aspects of care, advocacy, research, education, and injury prevention. The Trauma Center is committed to ensuring every child who suffers a tragedy like Devon’s gets everything they need so that one day they can reach their full potential.
Please join Devon as he inspires all the runners and walkers who are putting their best foot forward at the Nationwide Children's Hospital Columbus Marathon.
Mile Theme: OSU
Diagnosis: Bilateral Wilm's Tumor
Hometown: Whitehall, Ohio
When we talk about where we grew up, usually it is someplace like Columbus, Ohio or Lexington, Kentucky. 18-year old Madison Pharo could say she grew up at Nationwide Children's Hospital.
When Madison was not quite two-years old, her mother was changing her diaper when she noticed a lump. And that began Madison’s journey with Bilateral Wilm's Tumor, a stage V cancer of the kidneys and all the complications thereof.
“I remember those first few days following her diagnosis as if it were yesterday. Everything moved so quickly, like a whirlwind. We were taken to Admitting, where we were told not to worry about anything financially, and then up to a room. So many people were in and out of the room that evening. Madison had several tests that night and then surgery the following morning for a biopsy and central line. Chemotherapy began a few days later. Our life as we knew it changed drastically. For the next 13 months, she received intensive chemotherapy every three weeks and had three more major surgeries. She was admitted to the hospital countless times for fevers and other complications. Nationwide Children's truly became our home away from home,” Madison’s mom, Rebecca, recalls.
Each year, more than 150 families at Nationwide Children's Hospital hear the words no one wants to hear, “Your child has cancer.” Annually, inpatient admissions and outpatient visits exceed 13,000. We offer world-class diagnostic, treatment and research facilities that provide comprehensive, multi-disciplinary care for patients with cancer and acute and chronic blood disorders. Hematology/Oncology and BMT at Nationwide Children’s Hospital is the largest facility of its kind in Ohio and one of the largest in the United States. And because cancer is more than enough to worry about, Nationwide Children's Hospital is committed to caring for every child regardless of the family’s ability to pay.
“We were comfortable there. Knowing our daughter was being cared for by the very best provided peace of mind during a very scary, uncertain time. The doctors, nurses, PCA's, and other Hematology/Oncology families became our families,” says Madison’s mom.
Rebecca continues, “Madison is a fighter. She has shown strength, courage, and wisdom far beyond her years and has been an inspiration to many. She is now a cancer survivor. However, there is a price to pay for beating cancer. The treatment takes a toll on your body.” Madison has half of one kidney remaining and has chronic renal failure and high blood pressure. She received intraoperative radiation, which has caused scoliosis of her spine. She takes daily medications and sees her specialists at Nationwide Children’s regularly.
Proving her mother’s point that she is a fighter, Madison graduated from high school this year. She was a varsity athlete in two sports, a squad leader in the school band, a class officer, and a member of the National Honor Society.
“Madison's story could have had a dramatically different ending if not for Nationwide Children's Hospital. We are forever grateful,” says Rebecca. In a way, Madison’s story is having a new beginning. She received a four-year, full-tuition academic scholarship to attend The Ohio State University in the fall where she will study Engineering.
In her free time, Madison enjoys music and attending concerts. On marathon day, she will be singing out cheers of encouragement to participants as they pass through her special mile encouraging them to find their way home to the marathon finish line.
Mile Theme: Bubbles, Purple
Hometown: Canal Winchester, Ohio
It’s hard to believe that life can be complicated when you are only 4-months old. But it can be. That’s when Kaylin Williams first began having seizures. Within a month, she had developed a second type of seizure. What followed was a year-and-a-half of treatment. During this time, Kaylin also experienced delays in her development requiring physical, occupational and speech therapies which she received through Nationwide Children’s Hospital outpatient therapy services.
When Kaylin was 2, she developed an infection in her cerebral spinal fluid and was admitted to the hospital for 6 weeks, requiring continued treatment when she was able to go home. Several months later, little Kaylin returned to NCH and underwent a large resection of the right side of her brain and placement of titanium mesh where bone had disintegrated. She was, again, in the hospital for 6 weeks, mainly on the in-patient therapy floor recovering and re-learning to walk and use her left arm and hand. In November 2013, Kaylin returned to Nationwide Children’s for replacement of the temporary titanium mesh with a permanent plate.
Comprehensive pediatric epilepsy care requires unique specialists, leading technology and a multidisciplinary team. The National Association of Epilepsy Centers has accredited The Epilepsy Center at Nationwide Children’s Hospital as a level-four epilepsy program—the highest level of epilepsy care. In addition to standard services, the Center provides complex neurodiagnostic monitoring as well as neuropsychological and psychosocial evaluation and treatment. The level-four designation also means offering advanced epilepsy surgery services, including evaluation with intracranial electrodes.
“Nationwide Children's Hospital to our family means comfort, care and hope. Our family is comforted with the knowledge that we have such a wonderful organization right in our back yard. Throughout Kaylin’s journey, Nationwide Children’s was close by to answer our questions and treat her as needed. We are thankful that we have not had to uproot our family in order to seek the treatment that our daughter needs for her epilepsy. We cannot say enough about the care of the doctors, therapists, nurses, PCA's and other staff that have worked with our daughter (and us!) during all of her stays and visits at Nationwide Children’s,” says Kaylin’s mom, Stacey.
Today, 4-year old Kaylin’s life is less complicated than when she was 4-months old. Despite the surgeries, Kaylin continues to experience break-through seizures, but the seizures are now less severe and less frequent. “Our family remains hopeful that one day, with the help of Nationwide Children’s Hospital, Kaylin will gain control of her seizures and close the gap in her development delays,” says Stacey.
Join Kaylin and her family as they cheer on those who are participating in the Nationwide Children's Hospital Columbus Marathon and ultimately helping other kids with complicated illnesses like epilepsy.
|This mile is proudly sponsored by:|
The Encore Mile is for the 24 patients who represented Nationwide Children’s Hospital on each mile of the 2013 Nationwide Children’s Hospital Columbus Marathon. Because we're so inspired, motivated, and empowered by them, that we want them to come back for another round! And next year, the Encore Mile will be for the 24 patients who will line the streets this year.
Watch out for Mile 18 – it might be the rowdiest mile you cross. These Patient Champions are sure to pump you up for your last long stretch! Encore, please!
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Mile Theme: Car Racing
Diagnosis: Type 1 Diabetes
Hometown: Newark, Ohio
Dalton was recently diagnosed with Type 1 diabetes. This has not stopped him from being a very active little boy.
Diabetes symptoms include increased urinating, thirst and weight loss. If not treated adequately, diabetes can cause organ dysfunction. This particularly affects the eyes, kidneys, heart, blood vessels and nerves. Inadequate insulin can cause ketone production. Ketones bring acid into the blood and can cause life threatening illness that starts with symptoms of dehydration and rapid breathing and often belly pain and can progress to coma. The best way to completely prevent these problems is by keeping the blood glucose at normal values. For Type 1 diabetes, replacing the missing insulin with either an insulin pump or multiple insulin injections each day is the fundamental therapy.
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 diabetes. 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. The team serves as teacher and coach to families approximately four half-days per year to enable the family to provide excellent care 24 hours a day, seven days a week, 365 days a year. Our team includes physicians and advanced practitioners, diabetes educators, dietitians, social workers, diabetes nurses, and a psychologist.
Today, Dalton is very aware of his illness and will not eat or drink anything without checking with his mom or the person taking care of him. According to his mom, diabetes has even helped him a lot with his math skills.
Speaking of math, you can count on Dalton to be cheering all the participants at the Nationwide Children's Hospital Columbus Marathon as they come through his special mile.
Mile Theme: Disco/YMCA- Oliver Shelpman and the Groovy Heartbeats
Diagnosis: Heart Transplant
Hometown: Grove City, Ohio
Oliver's favorite song is YMCA by The Village People. He can sing and dance to the whole song and does so every day! This is pretty amazing considering he’s only 7-years old, but even more so because Oliver has already had multiple heart surgeries in his short life time, including a heart transplant.
Oliver was born at The Ohio State University Medical Center on April 6, 2007 and was transferred to Nationwide Children’s Hospital less than 4 hours later. While the transfer was sudden, it was not unexpected. Oliver had been diagnosed with HLHS (hypoplastic left heart syndrome) while he was still in the womb at only 22 weeks gestation.
HLHS is a condition where the left side chambers of the heart develop too small to work effectively. Because the left side of the heart pumps blood to the body, this can oftentimes be problematic. With this side being too small, the body does not get the blood it needs. As a result, the baby can become very sick shortly after birth. Without treatment, this condition is fatal. Treatment includes multiple surgeries.
Oliver’s first surgery at Nationwide Children’s went well and he went home at 2-1/2 weeks old. He developed normally and met all of his milestones on target. When he was 6-months old, Oliver had his second surgery. Once again, surgery went well. Unfortunately, he later developed a clot in his left pulmonary artery which ultimately led to a stroke. He went home two months later on oxygen and 24/7 feeds through a GJ tube placed in his stomach.
When Oliver was almost 3-years old he had a third surgery for tricuspid repair and clot removal. The hope was that his oxygen saturations would improve and he would soon be ready for his final surgery. Instead, shortly after his third birthday, Oliver had to be listed for heart transplant, which he received when he was age 3 years, 3 months. After 2 months of recovery, he went home.
The Lung and Heart-Lung Transplant Program is part of a multi-organ transplant center at Nationwide Children's Hospital. The transplant program utilizes a multidisciplinary team of lung transplant and heart-lung transplant experts in the transplantation of children and adults with childhood diseases. Our patients are able to see all of their physicians and health care team members in one visit and at one location. Our team of experts provides comprehensive support for our patients and their families, while maintaining a collaborative relationship with the referring physician.
Oliver has done very well from a heart standpoint since his heart transplant. He has some autism-like behaviors as a result of his medical history, primary immune disease, and developmental delays, but he is making gains in all areas.
Today, 7-year old Oliver is living a happy life. He enjoys iPhones and timers and has plans to one day "work in the Apple Store to sell iPhones." Join Oliver at his special mile and you may stop running or walking and take up singing and dancing to YMCA instead.
Mile Theme: Sparkle and Shine
Diagnosis: Cleft Lip/Palate
Hometown: Blacklick, Ohio
Before Grace was born, her parents learned that she would have a cleft lip and possible cleft palate. Cleft lip and/or cleft palate is one of the most common birth defects in the U.S., affecting approximately one in 700 babies. A cleft lip is the result of the lip not fusing together during the first few months of fetal development. This often includes the separation of the upper gum line. A cleft palate, which also occurs during the first few months of fetal development, is a separation in the roof of the mouth caused by the sides of the palate not completely fusing one another. A baby with cleft palate will need special feeding techniques, surgical repair and more.
“Dr. Kirschner and his team made us feel like family and gave us the confidence we needed to face this new trial in our lives,” says Grace’s mom, Kelly. Grace had her first surgery at four months and her second when she was 1-year old. But cleft treatment does not end with operative repair.
The Cleft Lip and Palate Center at Nationwide Children’s Hospital offers children and their families comprehensive care from a multi-disciplinary team of nationally recognized clinicians including plastic surgery, oral and maxillofacial surgery, orthodontics, otolaryngology (ENT), speech - language pathology, nursing, dentistry, social work, audiology, genetics, and psychology.
“Through the support of the doctors, nurses and staff, we got through one of the hardest things we ever had to go through as a family. We are forever grateful.” Grace’s parents took grateful to the next level and are paying it forward by comforting and helping other families with members who have cleft lip and/or cleft palate.
Today, Grace is a happy little girl. She loves sparkles, anything about princesses, gymnastics and playing outside with her friends. And she especially enjoys sharing her big beautiful smile, which is exactly what she will be doing as she cheers on the marathon participants at her special mile.
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Mile Theme: John Deer Tractor Trailers/Trucks
Hometown: Baltimore, Ohio
When Gabe Carlisle was diagnosed with Autism at the age of 3, he was a very frustrated toddler. His verbal language was limited and he had difficulty hearing. The latter was corrected with surgery, but Gabe still needed help.
When he turned 4, Gabe began to receive the help he needed at the Center for Autism Disorders at Nationwide Children's Hospital. Autism Spectrum Disorders (ASD) are a group of neurologically based developmental conditions that are characterized by delays in three areas: language and communication, socialization, and repetitive and ritualistic behaviors. The Center for Autism Spectrum Disorders and the Child Development Center at Nationwide Children’s Hospital provide comprehensive, multidisciplinary care focusing on evidence based treatment, education, research and advocacy for children with the diagnosis of an ASD.
Today Gabe is a happy 10-year-old who continues to grow intellectually and emotionally. “I am truly amazed at the progress my son has made in 5 years,” says Gabe’s mother, Denise. “It is amazing to watch his progress unfold right before our eyes. He is a much happier and confident child. We are very blessed to have crossed paths with Nationwide Children's Hospital Center for Autism Spectrum Disorders.”
Gabe he will be sharing his beautiful smile with all the runners and walkers who come through his special mile at the marathon.
Mile Theme: Super Heroes
Diagnosis: Adolescent Rumination Syndrome
Hometown: Grand Rapids, Michigan
Camila was born in Colombia, South America and currently lives in Michigan where she is studying psychology at Kalamazoo College. Even though her brother, Pablo, graduated from University of Michigan, Camila’s family is still fond of Ohio State. The family’s fondness for Ohio is not limited to our famous university. They also have a deep appreciation for Nationwide Children's Hospital. It was here that Camila was diagnosed with adolescent rumination syndrome (ARS).
Following a viral infection, Camila started having abdominal pain and vomiting after every meal. After two weeks, she had lost 15% of her body weight and was weak and continuously nauseous. The results of all of her medical tests and exams came back normal – but she continued to be ill. She missed much of her junior and senior years of high school. Many times she would be unable to eat and the only way she could get nutrition was through NJ feeding tubes.
Finally, Camila was referred to Nationwide Children's Hospital where she was diagnosed with ARS and “received life-changing treatment.” ARS is a condition where adolescents are not able to keep their food or drink down. The Adolescent Rumination Syndrome program at Nationwide Children's is unique in that all patients work with a large interdisciplinary team including GI specialists, pediatric psychologists, massage therapists, registered dietitians, child life specialists, and therapeutic recreation specialists.
Thanks to the team at Nationwide Children’s Hospital, Camila is finally able to live an almost-symptom free life. She loves being active, running and doing yoga. And, finally, she can eat her favorite food: ice-cream.
Camila’s brother, Pablo, will be running on her behalf. Let’s join her in cheering him on!
Mile Theme: You Are My Sunshine-Hope is on the Horizon
Diagnosis: Sanfilippo Syndrome
Hometown: Columbus, Ohio
Reagan is a happy and energetic 2-year-old girl who loves to dance, play and have tea parties. She makes everyone around her feel so joyful that it is hard to believe she has recently been diagnosed with a rare and fatal genetic disorder, MPS, otherwise known as Sanfilippo Syndrome.
Sanfilippo Syndrome results from defects in a lysosomal enzyme. Children with this disease are unable to appropriately break down sugar which causes carbohydrates to accumulate throughout the somatic and central nervous system. In other words, these children who appear normal at birth will later show severely delayed neurological development and become unable to talk, walk and even feed themselves. Children with Sanfilippo Syndrome oftentimes do not live past 20-years old.
Even though there is no cure or treatment for Sanfilippo Syndrome, there is hope. Some of the leading research on this fatal disease is taking place at Nationwide Children's Hospital, with the expectation of a possible gene therapy treatment going to human clinical trials soon.
The Research Institute at Nationwide Children’s Hospital is one of the fastest growing pediatric research centers in the United States and is ranked in the top 10 for National Institutes of Health funding among free-standing children’s hospitals. The Institute is organized into 12 Centers of Emphasis that allow traditional academic boundaries to be crossed and merged to facilitate interdisciplinary research. Among these centers is the Center for Gene Therapy where the research is taking place on Sanfilippo Syndrome. “
After hearing such devastating news only a few weeks ago, we are now filled with hope because of the wonderful doctors and research going on at Nationwide Children's Hospital. We are in a race against time to save our daughter, and I know the doctors and staff at Nationwide Children's are in the race with us. It gave us the feeling that we are not in this alone, and that the people at Nationwide Children's truly care for our daughter like one of their own,” says Reagan’s mother, Karin.
Please join Reagan at her special mile and know that your participation in this event to benefit Nationwide Children’s Hospital is helping the research to find a cure so that she will be able to plan and enjoy many, many more tea parties for the years to come.
Mile Theme: Legos
Diagnosis: Acute Myeloid Leukemia
Hometown: Lancaster, Ohio
It all began with something as simple as a back ache. When Jenny Straight took her son, Ian, to their doctor in Lancaster, Ohio, she had no idea that their lives were about to change. Ian was referred to Nationwide Children's Hospital where, at 2:30am on March 23, they learned that Ian had Acute Myeloid Leukemia (AML). By the morning Ian was admitted to the 12th floor of the hospital and began his 6-week stay. When he would be discharged, it would only be for a few days and then he would return for weeks of inpatient chemotherapy treatments.
In true form to Ian’s desire to one day join the military, this 11-year-old boy considered the strategic components of his illness. Ian’s mom, Jenny, says that while they were waiting to hear what type of leukemia Ian had, he said he hoped it would be AML because, although it is intense and worsens quickly, the treatment would be shorter and Ian “…wanted to get it over with.” Like the mission of the United States Air Force, Ian was determined to “...Fly, Fight, Win…” According to Mom, “He kept everyone looking forward, and dealt with everything as a means to an end - home and health.
”Every 30 minutes in the United States, a child is diagnosed with cancer. Leukemia is a type of cancer that affects the body's white blood cells (WBCs). Normally, WBCs help fight infection and protect the body against disease. But in leukemia, WBCs turn cancerous and multiply when they shouldn't. Nationwide Children’s Hospital is determined to beat childhood cancer in all forms. The Division of Hematology/Oncology and Blood and Marrow Transplant offers world-class cancer expertise and extraordinary patient care. Our staff of physicians, surgeons, scientists, nurses and staff provide a comprehensive approach to treatment.
Jenny shares, “The doctors and nurses treated us as family, going above and beyond simply medical care, but holding us when we cried, playing when we were able, always cheerful, confident, and kind. The hospital was amazing, from the rooms designed to keep up the kids' spirits, to volunteers and staff to pass time, to outreach to the parents and siblings.”
The United States Navy Seabees motto is “Can Do! ” and that describes Ian today - he was declared cancer free after numerous bone marrow biopsies, spinal taps, and two stays in ICU. He is enjoying being an 11-year-old kid again, building things with Legos, eating steak, shrimp and pasta and following his favorite team, the Columbus Blue Jackets. But that military way of thinking remains ever present. Earlier this year, Ian set up a snack stand on Saturdays to raise money for Nationwide Children’s Hospital, “So Others May Live.” Running or walking a marathon or half-marathon can be an arduous task. Join Ian as he inspires and motivates these dedicated participants when they pass his special mile.
|This mile is proudly sponsored by:|
Mile Theme: Emma's Greatest Dream- Butterflies
Diagnosis: Quadriplegic Cerebral Palsy
Hometown: Dublin, Ohio
Emma Dickman was born thirteen weeks early, weighing only 2 lbs 14 oz., and spent the first 72 days of her life in the NICU at Nationwide Children's Hospital. One week before her first birthday, she was diagnosed with cerebral palsy.
Cerebral Palsy, or CP, is a condition that causes movement difficulties. It results from an injury to the brain that occurs before a child is born, during delivery, or shortly after birth. Often times, there is no known reason for the brain injury. There is no cure; however, there are many treatments and resources that can greatly assist a child to ensure they achieve their full potential.
The integrated Cerebral Palsy Program at Nationwide Children’s Hospital is a multidisciplinary clinic committed to ensuring that every child reaches their full potential. The program emphasizes excellence in clinical care while also focusing on translational research that evaluates the many therapies currently in use, plus those that are just over the horizon.
“We are truly blessed to have such amazing people working with our children. The doctors and therapists are not just professionals, they are members of our extended family,” says Emma’s father, Steve.
Eight-year-old Emma may have been born small, but she faces her challenges with a big smile and determination to match. Recently Emma underwent major spinal cord surgery in an effort to enable her to make her biggest dream come true – to be able to walk. Since her surgery, she receives 3-5 hours of strenuous physical therapy each week. Emma’s dad says “She works harder than most adults we know.” When she is not “working,” Emma enjoys drawing and spending time with her yellow Labrador retriever, Sawyer.
Emma is truly an inspiration to others including her biggest fan, her 5-year-old brother Owen. She will have several family members and friends participating in the marathon. Join Emma as she cheers them on.