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Meet Our Heroes

At Cleveland Clinic Children's every child receives world-class care, from our youngest, littlest patients to our oldest, tallest patients. With “Meet Our Heroes” Cleveland Clinic Children’s is able to spotlight our bravest patients and most compassionate caregivers. Highlighting their successes and contributions affirms our commitment to the mission of providing compassionate, family centered, world-class pediatric care, working to restore children and adolescents to health so that they can return to their everyday activities as soon as possible.


Meet Our Hero - Jacoby

Jacoby's parents share the story of their brave young daughter.

We were pregnant with our second set of twins and at our 28 week ultrasound we were given the devastating news that Jacoby Hope (Baby B) was critically ill. Jacoby was diagnosed with non-immune hydrops fetalis, which is a severe, life threatening condition in which abnormal amounts of fluid build-up in two or more parts in the body of a fetus or newborn. Jacoby had accumulation of fluid in her chest cavity around her lungs and within layers of skin causing severe edema (swelling). Jacoby was given a 5% chance to make it to a live birth and if she did make it to a live birth she was given a 5% chance to survive. As a mother and a father we were completely crushed and felt so helpless knowing one of our baby girls was critically ill and no medical heroics could be taken as it would risk the life of our healthy baby girl, Jenna. As a mother, I was struggling to wrap my head around how I would prepare myself to be joyful and be the mother I needed to be for Jenna, but at the same time be prepared to grieve the passing of Jacoby. The weeks leading up to delivery, I made some of the most difficult phone calls that no mother should ever have to make. I called some local funeral homes and I also scheduled a volunteer photographer from Now I Lay Me Down to Sleep to be called in to take photographs of Jacoby. We tried to rest all our trust and faith with our Lord for that he was in complete control and indeed he was. My health declined and it forced the hand to deliver the girls earlier than desired, which we believe gave Jacoby a fighting chance.

On June 1, 2013, at 31 weeks our Hope Girls, Jenna and Jacoby were delivered. Shortly after birth, Kevin saw Jacoby for a few seconds as the nurses wheeled her to the NICU - she would not be seen again for a few hours. Jacoby was born 2 lbs. heavier than Jenna, all fluid, her body swollen and skin stretched. One of the bigger challenges was her blood gas levels which were finally resolved close to 8 hours after birth. A chest tube to drain the fluid which was hampering her breathing and lung development were inserted. We kept a close eye on the amount of fluid going in and the amount going out (input/output chart) as we understood given Jacoby’s swollen state, she needed to shed the excess fluid. After several months, and very good progress, we were told Jacoby was still the sickest child in the NICU – another awakening of how sick she was and that the journey was far from over. Jacoby experienced several ups and downs with fluid building in her chest which ultimately required two evasive, but lifesaving surgeries.

Over time, we slowly learned and realized that Jacoby would need a tracheostomy and be ventilator dependent after several failed attempts to extubate her. We stayed in the NICU for four months following her tracheostomy surgery for a total of 10 months before a nearly six month stay at Cleveland Clinic Children's Hospital for Rehabilitation. There are not enough words to describe the feeling of when your child is experiencing an event where their code button needs to be pushed and the number of people who run into the room within five seconds ready to take immediate action, no matter what is needed – absolutely unbelievable, stunning and overwhelming all at the same time. All the doctors; surgeons; nurses; and respiratory, physical, occupational and speech therapists are truly Jacoby’s guardian angels here on Earth. Special thanks to Dr. Rodriguez, Jacoby’s primary caregiver while in the NICU and his team of doctors, including Dr. Vladimir Burdjalov – who delivered Jacoby and saved her life the first night – words cannot express our appreciation.

After 16 months of being hospitalized we welcomed home Jacoby. Jacoby is such an amazing little girl that never quits. Our 16 month journey is a journey that only our God could perfectly direct and create. We have so many Team Jacoby Hope Prayer Warriors near and far that faithfully prayed to God to guide, to lead and bring us home. Many challenges and obstacles still lie ahead for Jacoby, but we are so excited to begin the next chapter of this journey with Jacoby finally here at HOME!


Read About Our Past Heroes

Max Lyle

Eleven-year-old Cleveland Clinic Children’s Patient Donates More Than 500 DVDs to Pediatric Cardiology Department

Resulting in “The Max Luis Lyles Video Library,” young patient holds Marfan Syndrome awareness fundraiser to purchase DVDs

This past March, the Cleveland Clinic Children’s Pediatric Cardiology department at main campus received several large boxes overflowing with DVDs for patients to enjoy. The more than 500 DVDs were postmarked from Newnan, Ga. – the hometown of 11-year-old Cleveland Clinic Children’s patient, Max Lyles.

“Max’s Cleveland Clinic DVD donation project began because my husband and I wanted to teach Max that it’s important to give back to your family, school, community and so on,” says Eliza Lyles, Max’s mother.

At first, Max wasn’t sure how he was going to give back, but he turned to his trusted pediatric cardiologist – Cleveland Clinic Children’s Kenneth Zahka, MD – for inspiration.

Dr. Zahka has been caring for Max since he was in second grade. Max and his mother both have a rare genetic disorder that affects the body’s connective tissue. Known as Marfan Syndrome, the disorder is found in only one in 5,000 children and adults.

With it, the connective tissue is very thin so any strong impact can cause a tear and potentially, internal bleeding. Marfan Syndrome can also cause aortic enlargement, which is an expansion of the main blood vessel that carries blood from the heart to the rest of the body, and is a symptom that Max and his mother both suffer from.

Max was diagnosed with Marfan Syndrome in September 2010. Max’s parents initially realized he wasn’t quite himself a few months earlier, in July, when he appeared to be very tired while playing in a Friday morning soccer game. Immediately following the game, Max went to a local physician who discovered Max had a heart murmur. This discovery prompted an additional test, which revealed Max had an enlarged ascending aorta with mild valve prolapse.

Max’s mother called the Cleveland Clinic Children’s pediatric cardiology department the following Monday and soon after, the family was headed to Cleveland for genetic testing with the knowledge that Max could potentially have Marfan Syndrome.

It was then, Max met Dr. Zahka and his assistant, Maryann – two people who Max’s mother says have made a lasting impression on him.

“I wasn’t all that surprised that Max wanted to ask Dr. Zahka how he could help the pediatric patients at Cleveland Clinic,” she said. “Max enjoys going to Cleveland Clinic and we initially told him that, similar to how Dr. Zahka has made his mark on Max, by giving back, Max could make his own mark.”

So, together, Max and Dr. Zahka decided the children who visit the pediatric cardiology department would benefit from having movies to watch in the waiting room. Max immediately knew how he was going to raise the money needed to purchase the DVDs – by selling golf balls.

For the past year, Max and his family have lived between the 5th and 6th holes of a local Newnan golf course. To them, golf is more than a sport or a leisure activity; it’s a way of life as it’s the only sport Max can play.

Because of the dangers Max faces from participation in contact sports, golf has been his saving grace – and he plays, on average, three to four times a week.

Upon moving to his golf-side home, Max began gathering and collecting stray golf balls. With buckets of golf balls sitting in his garage, he decided he would clean and sell them so he could then purchase DVDs for the children.

On February 22, during National Marfan Syndrome Awareness month, Max and a few of his friends set up a table on the cart path behind Max’s house with lemonade, Marfan Syndrome posters and lots of golf balls. They sold the recycled golf balls at a price of $1 for four balls.

When it was all said and done, Max raised nearly $600 for his Cleveland Clinic DVD donation project and educated an entire community on Marfan Syndrome. Max’s story was featured throughout The Heritage School where Max is a fifth-grade student, the Newnan Country Club, in the local town newspaper and more.

Max’s mother says the awareness Max has been able to generate about Marfan Syndrome has been incredible and has truly taught him one of life’s most important lessons:  the value of giving back.

“We actually learned that a woman in our neighborhood has a granddaughter with Marfan Syndrome,” she said. “Additionally, per a suggestion by one of the golfers who contributed to Max’s fundraising efforts, the Newnan Country Club now plans to host an annual Marfan Syndrome golf tournament.”

Max’s parents helped him purchase, package and ship the DVDs to Cleveland Clinic where they have found a permanent home in the “Max Luis Lyles Video Library.” A selection of duplicate DVDs was given to the Cleveland Clinic Cole Eye Institute pediatric waiting room.

Max plans to make annual donations each March to the pediatric cardiology department.

Nick Tianello
Nick Tianello

Nick's parents share their son's journey to becoming a competitive golfer.

Nick suffered a severe brachial plexus injury at birth. As a result of the permanent nerve damage, he did not move his left arm for the first eight months of his life. When he was 9-months-old he underwent nerve graph surgery to bypass or connect several torn and ripped nerves.

As Nick continues to grow and develop, secondary issues arise including; loss of range of motion, muscle strength and bulk in his left arm. None of this has stopped Nick from being active and playing sports. At 22-months-old Nick got a set of golf clubs to keep him using his arm. He has been hitting golf balls in his front yard ever since.

Now, at 8-years-old, Nick is on his fourth set of clubs and is playing golf competitively. Last fall, as a 7-year-old, he won the Cleveland U.S. Kids Golf Local Tour and last week played in the U.S. Kids Golf World Championship at Pinehurst Country Club in North Carolina. Way to go Nick!

Peyton's parents share the story of their miracle man.

Hi, my name is Peyton, and I am 17-months-old and I have a twin brother named Kyle. We were born premature at nearly 29 weeks, and at the time my parents were living in Arizona. Kyle weighed 2 lbs, 3 oz and I weighed in at 2 lbs, 5 oz. Both of us were born with a PDA, a congenital disorder in which a portion of our heart did not close off like it was supposed to do at birth. Fortunately for me mine stayed open, even after the doctors attempted to close it using Indocin. At two weeks of age I developed necrotizing enterocolitis. I needed surgery but I was too small and too sick at the time. While waiting for me to gain weight, an echocardiogram detected that I also had coarctation of the aorta. This means that the main vessel caring blood flow to the lower part of my body was too narrow. Thankfully the PDA allowed blood to flow around the narrow region.

September was a busy month for me. I was transferred to a children's hospital in Arizona to have my heart fixed. Thankfully they were able to do it through my back, in between my ribs. Fifteen days later I rejoined my brother in the NICU. Later in that same month I had my first bowel surgery. Thirty-three out of 80cm of my small intestine had to be removed due to the damage from the necrotizing enterocolitis. After this I had to be fed through an NG tube (small tube that is inserted in the nose and enters into my stomach). The doctors told my parents that I am truly a miracle baby.

Needless to say this has been difficult on my parents, so they decided it was best for us to move back to Cleveland where we would have great family support. Unfortunately, in October I developed a complication called strictures. I had another surgery to remove a few centimeters of my colon.

Finally, in December of 2012, we flew to Cleveland. I was admitted to Cleveland Clinic Children's NICU on December 22nd. I have had many obstacles including being transferred from Arizona to Cleveland, three seizures in January, and have undergone eight surgeries. I have been diagnosed with cerebral palsy, reflux, PVL, short gut, and global development delay.

Dr. Rodriguez and Peyton's NICU nurses never gave up on Peyton or us. People questioned us as to why we would choose Cleveland Clinic Children's over other children's hospitals. Everything Peyton needed (gastroenterology, cardiology, possibly neurology and new trials) are there. Peyton's neurologist is Dr. Hrisch and his gastroenterologist is Dr. Radhakrishnan (we love him and his sense of humor). We don't regret ever coming to Cleveland Clinic Children's and still keep in touch with the NICU. They saw every emotion expressed from us and never turned away. We cannot thank Cleveland Clinic Children's enough. Peyton has hit many odds and beaten many odds. He is our miracle man!

Alexis Odio Jr
A mother shares the story of her little prince.

Our son, Alexis Odio Jr's story began before he was born. I was 16 weeks pregnant when the Fetal Ultrasound diagnosed him with dextrocardia, unbalanced AV canal and double outlet right ventricle. The doctors made my husband and I aware of the complications that our child had and the extensive surgical procedures he would need once he was born. They presented us with all the facts and allowed us to choose the option that was best for our child, me and my family. Our faith in God and my commitment to my appointments led me to the best day of my life: Alexis Odio Jr. was born on February 20, 2013 weighing in at 8 lbs and 11 oz.

Unfortunately, I was not able to hold him after birth because he required immediate medical attention. The surgical doctor later explained to us that his stomach was on the left side, his liver was in the middle, and that he lacked a spleen. The good news was he did not need surgery immediately. It was heart breaking to see my little angel in the hospital with a lot of tubes and wires attached to him. Three days after he was born I was finally able to hold him. The bond between a mother and son was instantly formed. On February 27, 2013 we were sent home with a pulse oximetry device to measure his oxygen levels and his blood, and the knowledge that we would have a nurse visiting us on a weekly basis to check to see how he was doing.

Finally the day came he needed to have his surgery. On September 12, 2013 he had his first open heart surgery. My husband and I were scared and had a lot of mixed emotions. I was able to walk with him into the operating room and laid him on the operating table. It was very hard to watch them put him to sleep. With my emotions high, I burst into tears, I was scared. A few hours later the tears of sadness and fear turned to tears of happiness. The surgeon came out to tell us that the surgery went well and everything was going to be great. I was the happiest mother in the world - my little prince was going to be OK.

Our baby is a miracle baby. We thank god every day for giving us a strong baby boy - after three days, he was back to being a happy and hyper, normal little boy. Cleveland Clinic Children's is the best hospital and they took very good care of my son and made me feel like it was home. The nurses and the doctors were friendly and they took care of our son and other children as if they were their own. Our son will need another surgery when he is five and I would not want any other hospital to do his surgery.

We would like to tell all the families out there that you are not alone. We have been through this and it is hard and overwhelming, but have faith and remember your child is in great hands at Cleveland Clinic Children's. If you could see our son today, you would not know that he had surgery. He does all the normal baby things, he rolls over and lets me know he is enjoying life. If you would like to know more about our precious miracle boy, feel free to 'Like' his support page on Facebook: "Prayers for Alexis Odio Jr". Thank you and my god bless you and your children.


Sofia's parents share the story of their happy and accomplished 5-year-old.

Sofia is a happy and typical five-year-old. Shortly after her birth at Lake West Hospital in Willoughby, she was transported to Cleveland Clinic Children's and diagnosed with tricuspid atresia and pulmonary atresia. She has had three heart surgeries, her first one at four-days-old and her last, the Fontan, was almost two years ago. She is energetic and active, and two of her favorite activities are swimming and riding her bicycle. She began kindergarten this fall. Last spring, Sofia and her mom went to Columbus to testify at the Ohio Senate in support of the pulse ox bill, which is now a law requiring hospitals to screen every baby born in Ohio for critical congenital heart disease, like Sofia's. Way to go Sofia! We are grateful to the staff at Cleveland Clinic Children's, who have provided her care since birth and given her a great quality of life.

Michael Simoson

Michael's parents share the story of their courageous son.

Our son, Michael Simoson, was born with a congenital heart defect called Tetrology of Fallot. He had his first open heart surgery at seven days old. His second open heart surgery was in February of 2013. He's had three heart catheterizations and will have to have a couple more before he can have his complete repair (third open heart surgery), hopefully this year. We are forever grateful to our medical team and the Pediatric Cardiology Department at Cleveland Clinic Children's - Dr. Stewart, our surgeon; Dr. Prieto, our cardiologist; the anesthesiologists, nurses and the rest of the staff. Michael will have to have medical procedures done for the rest of his life and it helps to know that we have such a great team and support with Cleveland Clinic Children's.


Ethan's parents share the story of their 6-year-old miracle.

Ethan is our 6-year-old miracle! He was born with heterotaxy, pulmonary atresia, a single ventricle heart, transposition of the great arteries, and other heart defects. He has had two open heart surgeries and 15 heart catheterizations so far. He will face more surgeries and procedures in the future to continue to keep his heart as strong as possible. Ethan loves all things involving trains, trucks, and Legos! He also loves participating in activities involving art and sports. His family is constantly amazed by Ethan's energy and love of life, and feels so blessed to be able to watch him grow! Ethan is such a fighter and is beating the odds with his Congenital Heart Defects!

Elle Bodmann

As 6-year-old Elle Bodmann — who had just received a hearing aid (customized with color and sparkles) — walked out to the car with her parents, they basked in the warm summer day and in the comfort that their youngest daughter could now fully experience and engage in the world around her.

This became startlingly clear when Elle announced, “Mommy, I can hear traffic now.”

Thanks to technology, Elle’s world had opened up and she could hear normally, “which gave us such relief,” Mr. Bodmann says, “because we realized that everything really was going to be OK.”

Just two months earlier, Elle had been diagnosed with hearing loss.

“She passed her newborn and kindergarten screenings,” Mrs. Bodmann says. “It wasn’t until her class was learning about the five senses that she told us she had difficulty hearing in her left ear.”

In May 2012, the Bodmanns were referred to Cleveland Clinic’s Pediatric Hearing Management Clinic. After computed tomography imaging, Elle was diagnosed with an enlarged vestibular aqueduct. Because her duct is too big, her inner ear has too much pressure. For this reason she is highly likely to have increased hearing loss and balance changes. Elle currently has mild to moderate hearing loss in her left ear and hearing within normal limits in her other ear.

“The team at Cleveland Clinic gave us comprehensive care in one day,” Mr. Bodmann says. “Home, medical and school needs were starting to be coordinated. Beyond the audiologist meetings, we talked to authorities on disability laws, who showed us how to be advocates for Elle. And we learned that helping her hear better was the easy part; other things would be more difficult.”

Adds Mrs. Bodmann: “Our hearing health team assured us that Elle would be fine, and she will never live in a silent world because technology will likely always be a few steps ahead of her needs.”

In June, Elle received her hearing aid, and a whole new world opened up to her.

“Elle’s life has been immeasurably improved by her hearing aid,” Mrs. Bodmann says. “Unfortunately, we found that many insurance companies don’t cover the cost of hearing aids. It depends on the type of hearing loss, its severity and other factors. Under Ohio law, a unilateral hearing loss isn’t considered a disability.”

This frustration motivated the Bodmanns to try to raise enough money to buy a hearing aid for a child whose family couldn’t afford one.

They created a Personal Fundraising Page through Cleveland Clinic’s website and, at their annual holiday party, asked guests to make a donation to the hearing aid fund in lieu of bringing hostess gifts. Today, they’ve raised $3,100, and donations are still coming in.

“We’re grateful for the care Elle received, and we feel good about what her future holds,” says Mr. Bodmann.

Adds Mrs. Bodmann: “We don’t lose sight of the fact that there was a period of mourning following Elle’s diagnosis. It ended when she was so happy because she could hear. I can’t imagine a parent not being able to help their child because they simply didn’t have the money.”

Anthony Panzarella

Anthony's parents share the story of their "Miracle Baby".

Anthony was born on July 13, 2010 at 12:15 a.m. As any new parents we were extremely delighted to welcome our second child and everything was going as expected. About a half hour later we were noticing that his color was slightly blue and the nurse wanted the doctors to have a look and they took Anthony away. The next time we saw our son was in the Intensive Care Unit of Tri-Point Medical Center awaiting transport to Cleveland Clinic.

He was now battling for his life as a result of Congenital Heart Disease. We can’t give justice in such a short little story to describe to you what he went through, but what we can tell you is that God and advancements in technology kept him here. During this time Anthony underwent two major open heart surgeries struggling to recover from both with numerous heart catheterizations. Anthony fought for his life every single day struggling to survive for six months until the night before New Year’s Eve of 2010 when an event occurred.

Doctors had now informed us that our son was not going to make it, and Anthony began to rapidly deteriorate. We really don’t know how to describe to you what happened next, but let’s just leave it that Anthony had different plans.

With the wonderful help from all the doctors to every single one of the Pediatric Intensive Care Unit nurses at Cleveland Clinic Children's he was eventually transferred home and continues to improve today. There will need to be additional heart surgeries as his battle continues and he will need to strongly rely on advancements in technology. There is no way to avoid the emotional toll this places on the families involved; however, extended research and funding will allow more parents like ourselves to continue to create memories. Day and night he lives and enjoys every minute of every day as the happiest a child could be and is no different than any other child aside from the little scar on his chest. Anthony’s life has inspired many people, and most certainly ours. We truly are the proud parents of Anthony Panzarella our “Miracle Baby”.

Vivian Andorf

Vivian’s mom shares the story of this remarkably brave little girl.

Vivian has Heterotaxy RAI (right atrial isomerism) with Asplenia, Single Ventricle, Right Dominant AtrioVentrical Canal (AVC), Total Anomalous Pulmonary Vein Return (TAPVR), Pulmonary Atresia, and Pulmonary Vein Stenosis (PVS) in all 4 veins. She also has Malrotation and developed a colon stricture. She has had three open heart surgeries, Blalock–Taussig (BT) shunt and a TAPVR repair at three hours old, sutureless repair (for the PVS) at three months old and a bi-directional Glenn at seven months old. In addition she has had six heart catheterizations and two bowel surgeries.

“We were given a 95% mortality rate for the first year of her life,” says Vivian’s mother. “She has overcome the odds, but her fight is far from over. She will require additional catheterizations for many years and a Fontan procedure around four years old. Despite everything she is one of the happiest toddlers you will ever meet. We couldn’t imagine life without her and hope we never will.”

Julianna Browning

When Julianna was six, a diagnosis of scoliosis left the active elementary student asking “why me?” But she didn’t allow herself to get caught up in self-pity. Instead, Julianna, now nine, heads a local support group for girls just like her.

With a spinal curve of just 23-degrees, Julianna’s orthopaedic doctor, Dr. Ryan Goodwin, said surgery was not needed. Instead, at age seven, he fitted her with a back brace to wear at night.

Looking to connect with other girls who understood the braces and pain that came with a scoliosis diagnosis, Julianna began searching for support groups online. Information about a national organization called “Curvy Girls” popped up. The organization, which was started by a New York teen with scoliosis, had several chapters across the country, but the closest one to Julianna was more than two hours away in Columbus, Ohio.

Instead of making the trek to Columbus, Julianna and a friend decided to start their own Curvy Girls chapter in their hometown, Cleveland. Now, just three months in, the group has already grown to seven members — ranging in age from eight to 15.

At each monthly meeting, Julianna and her co-leader create a meeting agenda and hold an open forum where members can discuss the unique challenges of having scoliosis. At the group’s second meeting, the girls had the special opportunity to Skype with the founder of Curvy Girls, Leah Stoltz. Leah, impressed with the group’s speedy growth, offered words of encouragement and advice.

But the meetings don’t just benefit the girls, Julianna’s mother says. “The moms get a lot out of it, too,” says Marie. While the girls talk, the parents also have the chance to discuss their challenges and triumphs in parenting a child with scoliosis.

To learn more about Curvy Girls Cleveland, email Julianna and Marie Browning at

Cole Peterson

Cole Peterson has had nearly as many surgeries as he’s had birthdays. At just 10, the Taekwondo champ from Ohio has gone under the knife eight times to correct his birth defect, a unilateral cleft lip and palate.

At four, Cole expressed an interest in martial arts after reading the book There Are Monsters Everywhere by Mercer Mayer. So his parents, Christina and Dave, enrolled him in classes at the Mentor American Taekwondo Association (ATA) studio. Early on, the Petersons could tell Cole had a special talent.

In July 2011, Cole underwent his sixth surgery — a bone graft to repair his cleft palate— with Dr. Frank Papay, Chairman of Dermatology and Plastic Surgery at Cleveland Clinic. Bone was harvested from Cole’s hip and inserted in his cleft palate. His right nostril, which had narrowed over several years, was reconstructed as well.

Following the surgery, Cole was restricted in movement and asked to remain immobile for six to eight weeks while his brittle hip healed. Two weeks after surgery, the Petersons received disappointing news — Cole’s body was rejecting the bone graft and the surgery had to be re-performed. This set Cole’s recovery process back another few weeks. By October, Cole was finally given the go-ahead by doctors to resume normal activity, and he returned to the studio to train with hopes of making it to the 2012 ATA World Championships.

Only four months after surgery, Cole participated in a tournament, taking first place in forms, weapons, and sparring.

In late November, Cole faced yet another set back: a more than two-month bout of mononucleosis. Once cleared by doctors to return to ATA, Cole resumed training and went on to compete and place in several more tournaments.

Then, one week before World Championships, Cole had to undergo surgery one last time. A baby tooth imbedded in the palate next to his bone graft compromised the palate’s ability to heal. The tooth was extracted and the following day, Cole and his dad drove 14 hours from Cleveland to Little Rock, Arkansas, for Championships.

On June 22, 2012, Cole competed in the top ten category for forms and weapons (8 and under division) and took home the World Championship title in sparring. In May of this year, Cole traveled to Chicago to compete in the ATA District Championship. He took first place in sparring and will compete for a second world title in sparring (9 to 11 division) in Little Rock, Arkansas on July 12, 2013.

Breanna Sprenger

Every year on July 6, Breanna Sprenger celebrates her birthday the same way: She asks her parents to take her to Cleveland Clinic to visit certified nurse practitioner Lucy Andrews-Mann.

The outgoing fifth-grader had 16 surgeries at Cleveland Clinic, and Ms. Andrews-Mann was there for most of them.

Between the surgeries and her doctor’s appointments, 10-year-old Breanna has spent a good portion of her life at Cleveland Clinic, zipping around in her wheelchair, enjoying the company of specialists from Child Life Services and searching for therapy dogs to pet. “It’s her second home,” says her mom, Carrie Sprenger.

Breanna is equally at home in a swimming pool. In February, Breanna won two gold medals, a silver and a bronze in backstroke and freestyle swimming at the Jimi Flowers Classic Disability Swim Meet, held at the U.S. Olympic Training Center in Colorado Springs. The competition, sponsored by the U.S. Paralympics, was Breanna’s first. Her performance qualified her for the Paralympic trials this summer in Bismarck, N.D.

Breanna was born without legs and with just one arm. She swims by moving her entire torso,           dolphin-like. “People should know, don’t ever underestimate a person that has a disability,” she says. “Because they will prove you wrong.”

Poised and precocious, Breanna says her goals in life are “to be an Olympic swimmer, to be a Child Life specialist for Cleveland Clinic Children’s, to find a cure for cancer.”

Her determination has been evident since the very beginning: Breanna wasn’t expected to survive. Prenatal tests showed that she had numerous lifethreatening problems that included a hole in her heart and another in her brain, and she appeared to be missing a stomach as well, though that later proved incorrect. A spontaneous vascular interruption at five or six weeks of pregnancy had interfered with Breanna’s development.

Breanna’s mirthful laugh bubbles up from deep within her. She enjoys her life and “all the great people that are in it,” she says. Among those great people are her mother; her father, John Sprenger; and, even though she rolls her eyes in typical big-sister fashion, her siblings, Paighten, 7, and Chase, 5.

Forever the entertainer — she loves cheerleading and playing in the school band — Breanna was in her element when she appeared onstage with Delos M. Cosgrove, MD, CEO and President of Cleveland Clinic during part of his recent State of the Clinic address. The physicians and other caregivers in the audience gave her a standing ovation, which, says Breanna, made her happy.

It made her mom cry. “It was very emotional for me as a mother,” says Carrie. “I could see out in the auditorium her doctors … her surgeons … Lucy. I was bawling.”

So what advice does Breanna have for other children?

“Be brave.”

Ms. Andrews-Mann remembers Breanna at a mere 4 years old, “negotiating with me about doing something,” the nurse practitioner says. “She is becoming a lovely young woman with all the traits you hope for: strength, determination and a love for living. She is a force to be reckoned with!”

Riley Pearson
The Gift of Play

“You may have cancer. Don’t let it have you. NEVER, EVER let it have you.”

Bold words from a self-assured 14-year-old patient, Riley Pearson. They are the opening lines of a booklet called “Home Sweet Hospital” that Riley wrote — and now hands out to other patients requiring extended stays at Cleveland Clinic Children’s.

Riley was diagnosed with a cancerous bone tumor in her left leg and knee in December 2010. She underwent a yearlong course of inpatient chemotherapy and eight surgeries. Her grandmother bought her soft purple and lime-green sheets to use while in the hospital.

“Riley wheeled in big suitcases for every admission, one of which was filled with her own bedding,” says Sarah Thompson, a Child Life specialist at Children’s. “It made her more comfortable throughout her hospitalizations.” During her final week of chemotherapy, the enterprising teenager had an idea: She would provide a package with bedding, a dream catcher, soft tissues, lip balm and a “survival guide” for older children and teens facing long hospital stays.

“Home Sweet Hospital” is divided into four sections: you, family, faith and hospitals. It’s filled with no-nonsense advice. “Don’t expect your brothers and sisters to stay home and do nothing because you are sick. … If you never prayed before, God won’t be upset if now is the first time. … If you want something from a nurse, ask for it. They cannot read your mind.”

Riley’s goal was to pass along tips, not inspirational messages. “You get thrown into everything so fast,” says Riley. “I thought if kids had something that explained what they would face, it would make things a bit easier.” Her messages resonate with patients and families: Ms. Thompson says the mother of one of her patients recently expressed gratitude for the perspective Riley shares in the booklet.

“Hang in there,” Riley writes. “This will all be a memory for you one day and the memories aren’t all bad.” Her gift helps ensure that.

Meadow Pontius
The Gift of Healthi

Lynn Pontius calls her daughter Meadow “the feel-good medical story of the year.”

During a routine wellness examination, Deborah Lonzer, MD, Chair of the Department of Community Pediatrics for Cleveland Clinic Children’s, detected a murmur while listening to Meadow Pontius’ heart. That catch by Dr. Lonzer’s trained ear led to the diagnosis of a congenital cardiac anomaly and potentially lifesaving open-heart surgery.

And to think, says Lynn Pontius, she almost didn’t take Meadow to Dr. Lonzer. The Pontius family relies on a general practitioner near their Ashtabula, Ohio, home for medical care. But at the insistence of a friend, Mrs. Pontius made an appointment for her daughter with Dr. Lonzer at the Willoughby Hills Family Health Center before Meadow started kindergarten last fall. It was a 45-minute drive to the appointment — a trip Mrs. Pontius is forever grateful she made.

“I was impressed right off the bat because Dr. Lonzer talked directly to Meadow and was very thorough,” says Mrs. Pontius. Dr. Lonzer asked about Meadow’s family and social history before moving on to the physical exam. Halfway through, she listened to Meadow’s heart and heard the murmur. “There are lots of murmurs that kids have that are normal,” says Dr. Lonzer. “I knew this one was not normal, and I wanted Meadow to see a cardiologist.”

Pediatric cardiologist Kenneth Zahka, MD, conducted an echocardiogram and diagnosed Meadow’s sinus venosus atrial septal defect. The 5-year-old had a hole in the membrane between her atria — the chambers that receive blood back into the heart. In addition, the pulmonary veins that return oxygen to her heart were in the wrong place. The condition placed an extra load on Meadow’s heart, which could eventually cause heart rhythm and function problems. Dr. Zahka recommended surgery.

On Aug. 15, 2011, a surgical team at Cleveland Clinic Children’s repaired Meadow’s heart. “Three weeks after the initial exam by Dr. Lonzer, the Cleveland Clinic team had worked their magic!” says Mrs. Pontius. “We now have a child with a normal heart, and Meadow can expect a long and healthy life.”

Helping patients like Meadow is the most rewarding part of Dr. Lonzer’s 19-year career as a pediatrician. “The connections I make with patients are special,” she says. “I don’t feel like someone’s doctor; I feel like an ancillary family member.”

Mrs. Pontius would agree. She heaps praise on everyone at Children’s, from doctors to nursing assistants to Child Life specialists. “When it comes to care,” says Mrs. Pontius, “Cleveland Clinic is absolutely unsurpassed.”


Getting Kids Back in the Game

The ESPN Cleveland and Cleveland Clinic Children's Radiothon spotlights courageous kids who have overcome adversity to get back to what they love doing most. Their stories of courage and compassion inspire us all and motivate Cleveland Clinic Children’s caregivers to help kids get back in the game each day.

Justin Szabo

When Justin’s play on the football field got progressively worse his sophomore year, his friends and coaches started to notice. Justin was feeling ill for months, but instead of telling someone, he held it in and kept playing. But he couldn’t hide it from his mother, Denise. At the end of the season, she suspected mono and made a doctor’s appointment. What they soon found out shocked them both – Justin had cancer. Acute lymphoblastic leukemia, to be exact, known as ALL.

But in true Justin form, he didn’t let the diagnosis hold him back. He faced chemo head-on and was back on the field in a remarkable 10 months to play his junior year. Next year, Justin will be a senior.

Gregory Sperelakis

When Gregory was born, he lost the majority of his intestinal track to a disease called total colonic Hirschsprung’s Disease. He had his first surgery as an infant at Cleveland Clinic Children’s, and despite relocating to Cincinnati, Gregory and his mom Sherri continue to make the trip to Cleveland for Gregory’s care. He has more surgeries to come, but is an optimistic and energetic kid. Gregory plays basketball, baseball, is a budding comedian and finds time to run track as much as he can. Gregory recently completed second grade.

Charlie McMicken

Charlie was born with cardiomyopathy – a disease that affects the heart muscle. At three, his health began a rapid decline and he moved in to Cleveland Clinic Children’s. There, a team of doctors, nurses and staff became his extended family and a device called the Berlin Heart became his constant companion.

This device comes in two parts – one inside Charlie, connected to a pump on the outside. It helped keep him healthy until a transplant finally became available. Today, Charlie has a new heart. He's now back home with his mom, dad and brothers.

Matt McGlone

As a junior, Matt was a standout on his football and basketball teams, and was even being recruited by colleges. But in the summer of 2012, Matt woke up with a horrible headache and was overcome by fits of vomiting. What was happening in Matt’s brain was beyond anything he or his family could imagine. Matt was having a brain aneurysm, which if ruptured, could be deadly. Matt was rushed to Cleveland Clinic where he had surgery with Dr. Mark Bain, who used a coiling method to block off the aneurysm.

Last fall, his recovery was going so well that his doctor cleared him to play basketball. At one tournament, he actually scored the game winning 3-pointer in a championship game.

Jaime Bradford

Within 72 hours of admission to Cleveland Clinic Children’s and being placed on life support, Jaime Bradford received a heart and double lung transplant. Jaime had a history of heart problems and was diagnosed with pulmonary hypertension in seventh grade, but it wasn’t until the day after her 17th birthday that her condition became life threatening. After surgery, Jamie said she feels fantastic.

She used to become breathless just playing her guitar. Now, the 18-year-old goes mall-walking like any other teen.

Christine Tabar

A teenage girl shouldn’t have yellow eyes. But Christine Tabar was born with biliary atresia — a liver disease where the bile ducts designed to drain bile into the small intestine aren’t functioning properly. When she was eight weeks old, Christine had surgery called a Kasai procedure to reconstruct her liver and create a new bile duct. This was a stopgap measure — a “bridge” that would allow her to strengthen and grow until she was old enough to tolerate a liver transplant, which she received as a teen.

A recent graduate of the Ohio Center for Broadcasting, Christine enjoys working with the Child Life program at Cleveland Clinic Children’s, where she recently dressed up as Cinderella and dropped off books to patients.

Dan Schierenbeck

Dan was born with cerebral palsy, and though his mother Kathy was unable to hear his voice, she knew it was inside of him. The Schierenbecks took Dan to Cleveland Clinic Children’s Hospital for Rehabilitation where clinical professionals helped them to select a device that would allow Dan to talk via a computerized system. At first, Kathy says Dan only responded to prompts with one word answers. What’s your favorite color, Dan? Red. What do you want to be when you grow up? Astronaut.

One day, the Schiernbecks were at an event for communication devices and Dan’s father found out that John Glenn was in attendance. He asked John if he would speak to Dan for a couple of minutes.

When John Glenn approached Dan, he asked him, “do you know what you want to be when you grow up?” And Dan fired back as quickly as he could, “I want to be an astronaut when I grow up.” It was the first time he had spoken a full sentence.

Today, Dan is a bright teenager who is interested in improving communication devices so that he can help other people learn to find their voices.

Josh Cohen

Josh was only three years old when he was diagnosed with autism. Josh’s mom, Terri, says when she first heard the diagnosis, she was in denial. Josh wasn’t speaking clearly, but she knew how his brain functioned – she says they were hardwired together from birth. Josh came to the Lerner School for Autism about six years ago, and he’s grown leaps and bounds since.

Josh’s biggest accomplishment to date is that five years ago, he couldn’t speak full sentences or read. Today, Josh is one of the most talkative young men you’ll meet.

Courteney Belmonte

Courteney, a competitive cheerleader, was diagnosed with scoliosis at 13. Immediately, her family turned to Cleveland Clinic Children’s orthopaedic surgeons. They opted for surgery that same summer and her surgeon, Dr. Ryan Goodwin, fused the bones of the spine together with the help of bone grafts and used metallic implants to strengthen that bond. But even a serious spine surgery couldn’t keep Courteney from her true passion: cheerleading.

Ten months before Courteney was supposed to be cleared to cheer again, she was back at it – doing everything including back flips.

Braxton & Brayden Fello-Waters

On April 8, 2012, Kelsey and Jeff Waters’ lives were changed forever. Kelsey was pregnant and their doctor couldn’t find a heartbeat for one of their identical twin boys. The other boy was causing premature labor. The doctor did an emergency c-section at Cleveland Clinic Children’s Special Delivery Unit and their son Braxton Paul Waters was born. The boys were delivered at 30 weeks and 1 day. Brayden, Braxton’s twin, died before delivery.

The Waters’ feel that Cleveland Clinic Children’s nurses and doctors saved Braxton's life and taught them how to care for their premature baby.

PJ Williams

PJ was playing touch football with his brothers when a friend fell on his leg. He didn’t have severe pain from the injury, but his mother, Sophia, says he had a noticeable limp. As time passed, the limp didn’t get better and she took him to the ER where an x-ray revealed that PJ had a tumor on his leg. After working with Cleveland Clinic Children’s oncologist Dr. Margaret Thompson, the Williams’ learned that PJ’s tumor was malignant – an osteosarcoma. After month of chemotherapy, PJ celebrated his final treatment in late May.

Breanna Sprenger

Every year on July 6th, Breanna Sprenger celebrates her birthday the same way: She asks her parents to take her to Cleveland Clinic Children’s to visit certified nurse practitioner Lucy Andrews-Mann.

The outgoing 11-year-old has had 16 surgeries at Cleveland Clinic, and Ms. Andrews-Mann was there for most of them. Breanna was born without legs and with one partially functioning arm. And while her disability may seem severe, she’s never let it hold her back. Breanna started aquatic therapy at Cleveland Clinic Children’s when she was just 3-years old, and she’s been in the pool ever since. This year, she was named to the U.S. Paralympic Swim Team. She's the only athlete from Ohio on the 25-athlete roster and she'll compete in the World Championships in Montreal mid-August.