Patient Stories at Children's Mercy

"When 6-month-old Auggie came down with Respiratory Syncytial Virus (RSV) last winter, his mom Bianca wasn't sure where to begin getting care for him. They eventually ended up at Children's Mercy ER where Auggie received breathing treatments. Read what Bianca's experience was like at Children's Mercy and some advice she shares for other parents as respiratory virus season escalates."

In a matter of a few hours, Hunter Box went from being a healthy, active 17-year-old, to a severely ill teen struggling for his next breath. After two hospitalizations, he was diagnosed with eosinophilic asthma and a rare complication called plastic bronchitis. Now, thanks to the Children’s Mercy Advanced Asthma Interdisciplinary Respiratory (AAIR) Clinic, Hunter’s asthma is under control.

After a mysterious illness ravages Zei’s lungs and leaves her fighting for life, the critical care team re-invents its life support protocols to push the limits of medicine to give her a chance.

Jayden Johnson had his first life-threatening allergic reaction to peanut at just 13 months old. From then on, avoiding any products containing peanut became a full-time job for his family. Then Jayden signed up to take part in a clinical trial for a new treatment to potentially help him build up a tolerance to peanut. The treatment worked. He’s developed a tolerance to peanut, and with it a new-found freedom to do things he’d once only dreamed of.

Londyn's mother, Karla, knew something was wrong with her baby. She followed her gut and persisted until Londyn received the diagnosis and care she needed at Children's Mercy Kansas City.

Shaun and Tasha Rye share what a difference the Children’s Mercy Beacon Program has made for their son, 2-year-old Marcus. Marcus has a medically complex condition caused by chromosome 15q duplication and deletion syndrome, a genetic defect, resulting in global developmental delays, congenital heart disease including atrioventricular septal defect with restrictive VSD, DORV and PDA, supraventricular tachycardia, gastroesophageal reflux disease, intestinal malrotation, asthma, dystonia, cleft palate, and bilateral club feet. Marcus also has bilateral sensorineural hearing loss, wears glasses, has a gastrostomy tube for medications, and takes continuous jejunostomy tube feedings.

Diagnosed with chromosomal abnormalities before birth, Odin Buser's medical care is complex. That's why his parents, Mark and Courtney Buser, have turned to the Beacon Program for help. The Beacon Program team is working with Odin's family to meet his unique medical needs and improve his quality of life.

Quinn Cunningham has Rett syndrome, a progressively debilitating neurodevelopmental disorder. That's why her family relies on the Beacon Clinic to coordinate her complex care for respiratory, gastrointestinal and neurological issues.

Hospitals can be scary places. That’s why the certified child life specialists at Children’s Mercy do whatever it takes to make kids feel empowered and comfortable during their stay. From hosting carnivals and patient proms, to using child-friendly models, pictures and real-life canine buddies (Hope and Hunter, the service dogs!), Child Life eases stress and anxiety for kiddos and their families.

A rare rash and inconsolable crying triggered a St. Joseph, Mo., mom to take her infant to the pediatrician; and then to Children’s Mercy via ground ambulance. Immediate treatment for scalded skin syndrome meant a brief hospital stay for Knox, who is heathy today.

Following the birth of their son, Matthew, first-time parents Natalie and Phillip Meznar noticed something was seriously wrong. Suffering from breathing issues, the Neonatal Transport team at Children's Mercy quickly transported Matthew to the hospital for care, where he was diagnosed with a rare condition called pulmonary arteriovenous malformation, or PAVM.

As a 2-year-old, Owen Sheeley had an unexplained seizure. Testing showed nothing remarkable but after a few seizure-free months, Owen had another major seizure. He was taken to the nearest hospital where Children’s Mercy Critical Care Transport was contacted. Upon arrival, the team prepared Owen for a flight to Kansas City.

Six-year-old Paizlee received an injury to the head from a game of baseball that caused her brain to swell. Rushing against time, the Children’s Mercy Critical Care Transport team arrived to bring Paizlee to the hospital in time for the care she needed.

Born six and one-half years ago at only 23 weeks, 5 days of gestation, and weighing l pound, 12 ounces, Parker McElroy’s mother, Kylie, said he is alive today thanks to the Children’s Mercy Neonatal Transport team.

A low heart rate led to Willow Noud being delivered by C-section at a local hospital. Trouble breathing and undetectable blood sugars after birth initiated a call to the Children’s Mercy Critical Care Transport team to take Willow to the Level IV nursery at Children’s Mercy Kansas City.

What started as a normal school day for Xavier Scruggs, 17, quickly changed when he passed out at soccer practice. Revived by CPR, Xavier was taken to a local hospital. Unable to explain what had happened, the Children’s Mercy Critical Care Transport team was called to take Xavier to the Children’s Mercy Pediatric Intensive Care Unit.

A thirsty 2-year-old isn’t likely to arouse concerns – especially during the brutal heat of a Midwestern summer. But Mason Brennan’s mother knew something was amiss when her son’s requests for water became excessive.

First-time mom Erika has been through a lot with her daughter Birdie. From delivering in our Fetal Health Center to several months in the NICU and multiple surgeries, Erika knows the hospital so well that she joined our staff! Read Erika and Birdie's story.  

Kingston Morris was born at Children’s Mercy in March 2023, when a team of nearly 30 providers and several departments completed a rare EXIT-to-airway procedure. He has been diagnosed with CHD4 Neuromuscular Disorder and has number of challenges, but has shown remarkable progress during his time in the Neonatal Intensive Care Unit (NICU).

Samantha Moran’s water broke in the middle of the night just hours before she was scheduled to travel to the Elizabeth J. Ferrell Fetal Health Center to give birth. That’s when the Fetal Transport Team sprang into action, safely bringing her and baby Kyler, who had been diagnosed with a congenital diaphragmatic hernia, to the hospital for care.

Doctors at Children’s Mercy diagnosed Hazel Moffett’s heart defect before she was born, and repaired it when she was only 8 days old. Today the 1-year-old is developing normally—laughing and playing.

When a fetal echocardiogram reveals a critical heart defect—and the baby has to undergo life-saving cardiac surgery only eight days after birth—you don’t expect the mother to label the experience as “awesome.” But Traci Pierson actually describes her son Levi’s birth in even more glowing terms. “Despite the fact that my child had a serious birth defect,” Traci said, “I look back on his delivery as even better than my first son’s”—a remarkable statement considering that big brother Liam was born with no health concerns.

Follow the Baldwin family's journey through the Fetal Cardiology Program at Children's Mercy when their son Hartman was prenatally diagnosed with Hypoplastic Right Heart Syndrome.

Just 18 weeks into her pregnancy, Mariah Schumacher learned her baby boy had a defect in his abdominal wall that would require surgery to repair. Thanks to the Elizabeth J. Ferrell Fetal Health Center at Children’s Mercy, Mariah was able to give birth in the same hospital where her baby’s surgery was performed.

Fetal surgeons at Children’s Mercy push the possibilities with a dramatic spinal repair surgery performed on baby Evelyn before birth.

Ten weeks before their son, Jude, was born, Tracy and Chris Schinzel learned he had a large oral tumor attached to the roof of his mouth that made it almost impossible to breathe. The Elizabeth J. Ferrell Fetal Health Center at Children’s Mercy and a team of experts orchestrated a series of complex procedures that put a smile on Jude’s face.

Diagnosed at 23 weeks with a rare brain defect, schizencephaly, Ajla and Audie Leonard have received the advantage of specialized care from a wide range of Children’s Mercy’s health experts.

Johnny and Sammy were struggling in the womb. Laser ablation surgery gave them a chance at life.

Parker is a fierce fighter against rhabdomyosarcoma. Her family received valuable information through the Genomic Answers for Kids program that will help Parker, her sister and her parents be proactive about their health screenings in the future.

Diagnosed with a rare, life-threatening syndrome called Brown-Vialetto-Van Laere syndrome, or BVVL, Dalton is treated at Children’s Mercy by a team of specialists including Jean-Baptiste Le Pichon, MD, PhD, pediatric neurologist. Dr. Le Pichon prescribes vitamin B-12, a promising new treatment, and Dalton’s condition greatly improves.

Thanks to ground-breaking research at the Genomic Medicine Center at Children’s Mercy, new treatments provide hope to infants with acute lymphoblastic leukemia, a rare cancer of the blood and bone marrow that has a very poor prognosis. Watch as baby Brisia joins just 49 other infants around in the world in an oncology trial that pairs special drugs along with her standard chemotherapy in hopes of improving her chances for a cure.

June and her family found answers and relief because of Genomic Answers for Kids, a flagship program of the Children’s Mercy Research Institute.

Bailey has been living with Crohn’s disease, an inflammatory bowel disease (IBD) that can affect the entire digestive tract, for almost half of her life. She has powered through flare-ups with the help of our IBD Team and continues to keep a positive outlook on life.

Leah Steinacker was a busy, active high school senior when sudden, severe stomach pain landed her in the hospital at Children’s Mercy. Her experience receiving care for Crohn's disease inspired her Master's thesis project - a waiting room kit for kids.

Several complex medical conditions make visits to Children’s Mercy a challenge for TJ DeCow. Now, telemedicine visits are making it possible for TJ’s doctors to check in on him remotely, reducing his anxiety level, saving travel time to and from the hospital, and limiting time away from work for his mom.

Born with several of her organs outside of her body, Tristyn wasn't supposed to live past age 4. With the support of Children's Mercy experts and a family mantra of getting through whatever is placed in front of them, Tristyn is now a thriving 11-year-old.

At 4 ½, Amarissa Hampton has struggled with painful constipation since birth. Finally, she was referred to the Gastrointestinal team at Children’s Mercy, and after a lengthy hospitalization, she’s doing better than ever. Now she’s enjoying her favorite foods, like ice cream and pizza, she has lots of energy, and she’s thriving for the first time in her young life.

Colson was diagnosed with Crohn's disease and with the help Dr. Julie Bass, Medical Director of the Inflammatory Bowel Disease Program at Children's Mercy, and his mother, he is now receiving family-centered care.

Severe gastrointestinal pain can be debilitating. See how the GI Pain Lab at Children’s Mercy combines medicine with biofeedback and other treatments to help kids like Zane live with less pain.

A rare genetic condition causes polyps to continually form in Toby Nguyen’s intestines. But thanks to the Children’s Mercy Polyposis Center and a unique test called double balloon enteroscopy, it’s under control.

Austin is a kid who loves creative activities - many of which help him manage his rumination syndrome. Through a multidisciplinary approach, the Rumination Disorder Clinic has helped Austin find techniques to help with his body's involuntary response to swallowing food.

Normally a high-energy kid, Elijah’s ongoing nausea and fatigue sent him to the ER multiple times. When his mom pushed for an X-ray, they discovered Elijah had ingested 37 tiny magnets. Find out how Children’s Mercy helped Elijah find his spark again—and why magnets aren’t toys!

Seventeen-year-old Bobbi Horr was referred to Children’s Mercy when she was unable to swallow her food and began spitting it up constantly. The Gastroenterology team diagnosed her with rumination disorder, a rare syndrome often caused by stress. Thanks to behavioral modification, Bobbi has learned how to effectively manage her stress, and continue her active life as a junior at Holton High School.

Siblings Avery and MK both struggled with the pain of endometriosis. Holistic care from the Children’s Mercy Gynecology department has helped them get back to normal teen activities.

When 13-year-old Taylor Stewart seemed to be getting sicker and sicker with abdominal pain, nausea and weight loss, she turned to Children’s Mercy and the Endometriosis Care program. That’s where she was diagnosed and treated for the debilitating condition, endometriosis. Today, she’s feeling much better, getting back to her busy routine as an active teen.

Cartier had a severe form of myocarditis, inflammation of the heart muscle. Through the support of his family and a large multidisciplinary care team, he made a full recovery — no transplant needed!

Born premature and forced to undergo open-heart surgery at just three months old, this brave boy is now growing into a full-fledged toddler.  

Brexley, a joyful baby, faced a life-threatening situation at just 18 days old but was saved by quick action from Master Trooper Evan Jacks and expert medical care. Diagnosed with Shone’s Complex, she underwent successful treatments and is now thriving under close medical supervision.

If Jaxon, 16, had been born just one generation earlier, his hypoplastic left heart syndrome (HLHS) diagnosis would have been fatal. Medical advancements — and his family’s big love — made it possible for him to have a typical childhood. Now he’s celebrating teenage milestones, like getting his driver’s license, with his parents and siblings. Read more about how Jaxon doesn't let his diagnosis rule his life and his journey as a trailblazer who is growing up strong. 

Winston Wahlgren has hypoplastic left heart syndrome, or HLHS, a congenital heart defect that requires three heart surgeries to repair. His parents used the CHAMP App, an innovative PC tablet-based application created by Children’s Mercy researchers, to monitor his condition between surgeries.

Holden was born with a congenital heart defect. Two open heart surgeries have given him reason to celebrate.

Fifteen year old Hannah could pretend her heart wasn’t a problem during marching band practice by “fake playing” as she paraded around the field. But eventually, the cardiomyopathy that plagued her family forced her off the field and into a hospital bed. There, she could only wait for a donor heart to save her life. Hannah became the first heart-transplant patient at Children's Mercy.

Leah was born with half a heart, and despite several surgeries, it’s failing fast. Cardiac and critical care specialists work to keep her alive, hoping a new heart can be found in time.

Baby Ziah depends upon a passionate team of prenatal and cardiac specialists to help her survive through birth and the heart repairs needed during her first year of life.

10 years ago, Hailey was battling medulloblastoma. Today, she’s an active preteen known for her big heart. (And sass!) Read Hailey’s inspiring story and learn how our Survive & Thrive Clinic supports kids like her.

Lexy is a strong-willed five-year-old who loves art projects, tater tots, facility dog Jellybean and her big brother, Klay.  Her fierce disposition has led the way during a challenging cancer diagnosis — and will continue to serve her well as a kid growing up with a limb difference. 

Camaya, one of three identical triplets, was a snuggly, happy baby until around 7 months old, when her parents noticed she was unusually listless and fussy. A rapid series of tests determined Camaya had an aggressive type of brain cancer called an atypical teratoid rhabdoid tumor. 

Her Children's Mercy team, led by neuro-oncologist Kevin Ginn, MD, had to get creative with the type and sequence of Camaya's treatments in order to attack the tumor without additional damage to her brain. Read more on Camaya's journey through chemotherapy, surgery and proton therapy.

“I don’t think there’s anything that can dull Elsie’s sparkle,” her mom says. For 4-year-old Elsie and her family, being part of a research study during her acute lymphoblastic leukemia treatment is their way of paying it forward for other families who need cancer care in the future. These necessary research studies have helped the oncology community make dramatic strides forward in the last few decades—all while providing patients with cutting-edge therapy today. See Elsie's video story

One typical morning, Elaina’s parents received a call about her bloodwork confirming the unexpected: “We think it’s leukemia.” Watch to hear her journey to remission, the challenges she’s overcome and the research still needed to provide more treatment options for Hispanic children diagnosed with cancer.

Munira Nuru began her cancer journey just days before her 17^th birthday. With the Children’s Mercy Cancer Center team on her side and a determined spirit, her cancer is now in remission and her future is bright.

Teo was diagnosed with acute promyelocytic leukemia (APL) and started treatment immediately. Thanks to a clinical trial, Teo was able to complete his treatment much more quickly and get back to the activities he loves.

One day Little League pitcher, Nick, just wasn't himself on the field. After a visit with his pediatrician, Nick was referred to Children's Mercy where the cause was diagnosed — a condition that hinders the bone marrow from making enough blood cells. See how Nick found the right treatment and even threw out the first pitch at a New York Yankees game.

Hadil, a Syrian refugee, had battled a rare inherited blood disorder since birth called beta thalassemia major. Now thanks to a successful bone marrow transplant at Children’s Mercy, where survival rates are at or above national averages, she is meeting the challenges of life in her new home.

In his first year of life, "Chase the Champ" was diagnosed with an aggressive tumor that accounts for about 5% of pediatric kidney cancers. At one point, he was given only 72 hours to live, but now Chase is a resilient, young cancer survivor!

Despite the life-threatening diagnosis of advanced Ewing sarcoma, Maruska and Jeff Goodwin, Leicester, United Kingdom, were determined to find answers for their 8-year-old son, Alex. At Children’s Mercy, they discovered the expertise Alex needed to not only beat cancer, but to grow stronger day by day.

Gavin Beaver has been in the fight of his life since he was 9 years old, battling a rare type of cancer called Ewing sarcoma. With the team from Children’s Mercy in his corner, he has the strength and willpower to continue his fight, exceeding everyone’s expectations.

The Children’s Mercy Hemophilia Care Team travels to Dodge City, Kan., to deliver care to patients living with this life-threatening disorder. Mark and his big brother, Ethan, both have hemophilia, and depend on the team for the treatments they need to better manage the disease.

Meet Magnus, a 10-year-old battling Hodgkin lymphoma. This cancer journey is told from a perspective we don't get too often — his.

#MagnusStrong

Miqueas' mother grew concerned as a small bump on her son's neck began to grow. With limited English, she struggled to find the best care for Miqueas. After meeting with Dr. Flatt, Director of the Spanish-Speaking Cancer Clinic and cancer specialist at Children's Mercy, they found the answers and care they needed.

Three-year-old Pepito has Hodgkin lymphoma, a cancer rarely found in children his age. Alan Gamis, MD, a pediatric oncologist at Children’s Mercy, prescribes chemotherapy and radiation to shrink the softball-sized tumor in his neck, and stop the cancer in its tracks.

Clara was born with a tumor the size of a golf ball on the back of her tongue. Genetic testing of the tumor showed that Clara had a rare form of cancer. By obtaining approval for a compassionate use trial—essentially a clinical trial just for her—Clara's doctors were able to successfully treat her cancer.

A father returns from service overseas to join the Children’s Mercy oncology team in its life-saving battle to save his son, Peyton, from aggressive cancer.

Kambre Jo Konrade started kindergarten facing a life-threatening obstacle—a grapefruit-sized mass above her knee called an osteosarcoma. The experts at Children’s Mercy performed a procedure called a rotationplasty. Today, Kambre’s tumor is gone, and she has good function in her leg.

A winning athlete on the tennis court, McKenzie Haynes used that same spirit to meet the challenge of her young life—refractory anemia with excess blasts Type 1. Treatment at Children’s Mercy included blood transfusions, chemotherapy and a bone marrow transplant. Several months later, she was back on the court in top form.

At just 15 years old, Persephone Consuela (Suela) Duran was diagnosed with a rare form of cancer called rhabdomyosarcoma. Luckily, the Salina, Kan., teen lived less than 200 miles from one of the premier hospitals in the nation known for treating this deadly disease, and sought help at Children’s Mercy Kansas City.

Connor's family chose Children's Mercy over many other options to care for Connor when he was born with X-linked severe combined immunodeficiency (SCID). Learn about his experience.

Elijah was born with Sickle Cell Disease. Meet Elijah and learn about his care team at Children's Mercy.

Four-year-old Wyatt was diagnosed with a rare genetic multisystem disorder called TPI shortly after he was born. A bone marrow transplant at Children’s Mercy, was his best chance for survival.

Bryce and his younger brothers, Clayton and Michael, all have a genetic condition called von Hippel-Lindau syndrome, which causes tumors to form on the adrenal glands. The Children's Mercy Cancer Center team monitors Bryce and his brothers through the Surveillance for Predisposition to Tumors (SPoT) Clinic. This clinic provides regular check-ups for children with genetic conditions that are more likely to cause tumors.

When Tripp was 3 years old, a CT scan and biopsy confirmed he had a common type of childhood kidney cancer called Wilms tumor. What wasn’t common was that it had already spread to Tripp’s lymph nodes. Following tough therapy for a tough tumor, Tripp is now back to playing with trucks and dinosaurs!

Even though he is just four years old, Lucas Whitacre has overcome many challenges already, including feeding and nutrition issues, a brain tumor and a stroke. Children’s Mercy Home Care helps medically complex kids like Lucas and his mom Shannon get the care they need without the burden of extra trips to the hospital.

When every minute counts, a great partnership matters.

Baby Emersyn’s temperature spikes on a routine Saturday morning, prompting her community pediatrician to refer her straight to the Emergency Department at Children’s Mercy Hospital Kansas. Using cutting-edge technology, the Infectious Diseases team rapidly diagnoses Emersyn with E. coli meningitis, which if not caught early, can have a devastating outcome.

Brianna Schmitz experienced a mix of fear and relief when she first held her premature son, Bodhi, in the Neonatal Intensive Care Unit (NICU). Born at just 28 weeks and weighing less than two pounds, Bodhi benefited from the hospital’s Kangaroo Care program, which emphasizes skin-to-skin contact to promote bonding and numerous health benefits. This practice, supported by dedicated NICU staff, has shown remarkable results in improving the well-being of both premature infants and their parents.

Kaydee started her journey as a premature newborn, weighing only 1 pound and 6 ounces. She faced significant challenges, including severe bronchopulmonary dysplasia, and was transferred to our Level IV NICU at 4 months old. Today, Kaydee is an energetic, horse-riding 10-year-old breathing on her own and thriving on her family's ranch.

Kingston Morris was born at Children’s Mercy in March 2023, when a team of nearly 30 providers and several departments completed a rare EXIT-to-airway procedure. He has been diagnosed with CHD4 Neuromuscular Disorder and has number of challenges, but has shown remarkable progress during his time in the Neonatal Intensive Care Unit (NICU).

When Jaciel Ceballas Lemus was born, the skin was missing from the palms of his hands and soles of his feet, and soon blisters, some the size of quarters, covered his body. At Children’s Mercy, he was diagnosed with a rare genetic skin disorder called epidermolysis bullosa simplex (EBS). With dedicated support from his family and medical team, Jaciel’s skin now has healed, and he’s home for the first time since his birth.

Pink tutus and Peppa Pig are just two of the things 4-year-old Emersyn Gross loves. Find out how Children’s Mercy helped diagnose and treat her rare genetic condition so she can enjoy being a kid.

If you want to know what life with a tracheostomy is like, just ask Kieesha. With the help of the Children's Mercy Tracheostomy Team, she's successfully managed life with a trach for almost all of her 9 years. In spite of her complex medical needs, Kieesha doesn't let her trach slow her down.

Born premature and diagnosed with cerebral palsy, Hailey Bertoncino’s physical challenges have made walking, and especially running, difficult. But with the help of the Children’s Mercy Comprehensive Movement Disorders and Spasticity Clinic, a special surgery called selective dorsal rhizotomy, and extensive rehabilitation, her goal is to play T-ball this summer.

Natalia was having up to 30 seizures a day. An advanced neurostimulation implant silenced them all.

Tenley is a people-loving 10-year-old who adores roller coasters, swimming and cheerleading. She also also lives with Dravet Syndrome, a rare form of severe epilepsy with symptoms that affect almost every system in the body. With the help of the Epilepsy Center, Tenley has gone from experiencing hundreds of seizures a day to a life full of the things she loves.

Thirteen-year-old Derek Ahlstedt began having seizures when he was only 18 months old, and has struggled with them ever since. Thanks to new technology called ROSA® Brain, a Children’s Mercy neurosurgeon was able to pinpoint the source of his seizures, and remove the dysfunctioning portion of his brain. He’s now seizure-free and looking forward to the possibility of driving one day.

Christian Kaufman, MD, Children’s Mercy pediatric neurosurgeon, performs an intricate surgery to remove abnormal brain tissue, which should help stop severe epileptic seizures for Gary. Months later, Gary is seizure-free, and is slowly being taken off his anti-seizure medications.

Despite being diagnosed with a rare genetic disorder called Glut1 that causes seizures, Reed Williams is active and healthy. His family credits the Children’s Mercy Ketogenic Diet Program with making that possible.

When Bertha Guillen's son, Santi, struggled with seizures, she was told he may never walk or talk. But with the help of an innovative diet plan, his epilepsy has been controlled, even without the use of medication. Watch Santi's story to see how a mother got her son back.

Diagnosed with the rare genetic disorder Glut1 as an infant, Vito Costanza had constant seizures until beginning the ketogenic diet at Children’s Mercy. Thankfully, the diet has been a lifesaver for Vito.

The Children’s Mercy Comprehensive Stroke Clinic stabilized newborn Ben McKinnon using blood thinners after he had a life-threatening perinatal stroke. Today, the toddler is walking and running, thanks to early intervention.

Before she was born, Sadie Ewy suffered a perinatal stroke. That’s why her family turned to the Children’s Mercy Comprehensive Stroke Clinic. Now 2, she’s doing so well she’s “high-fiving” her doctors.

A 2 ½ years old Talan Turner suffered a devastating stroke. After months of physical, occupational and speech therapy at Children’s Mercy, Talan is walking, running and chasing the family dog.