Titus’s Story

To look at him at birth, Titus Nee appeared to be a healthy, strong baby, weighing nearly 8½ pounds. It would not be long, however, before Titus’ parents – Nicole and Eric – discovered that their newborn third child would be struggling for survival with every breath.

The first, but not most urgent, concern doctors noticed with Titus was a cleft palate, or a split in the back portion of the roof of his mouth. Surgery to repair this condition could wait for at least a year.

More troubling, however, was Titus’ inability to gain weight. He couldn’t nurse because of the cleft palate, and virtually every drop of bottled milk he tried to drink would dribble out of his mouth.

Titus’ breathing was also worrisome because it was quite noisy, especially at night. He also stopped breathing intermittently – for 3 to 5 seconds at a time, then catch his breath, gasp slightly and resume breathing.

His local pediatrician in Sun Prairie, Wis., referred Titus to American Family Children’s Hospital in Madison, where UW Health pediatric otolaryngologists – ear, nose and throat (ENT) surgeons – expressed serious concerns about Titus’ weight and breathing issues.

“Being told that your baby is ‘failing to thrive’ was pretty scary,” says Nicole.

Nicole and Eric learned that what little milk Titus was getting into his mouth was going not into his stomach, but his lungs – a dangerous condition called aspiration. Immediately, Titus was hooked up to a feeding tube because of the risk of further aspiration. He soon began to gain weight, a ray of sunshine amid so many clouds of concern.

Jaw Deformity Pinpointed as Culprit

Additional testing revealed that Titus was laboring to take in each breath. Very little air was getting into his lungs because his tongue would fall back further than it should, blocking most of his airway. Ultimately, Titus’s troubles were attributed to a jaw deformity. He was born with a small lower jaw that was set back just enough to prevent normal rhythmic breathing. He also was diagnosed with Pierre Robin Sequence, which comprises three conditions:

  • A smaller than normal, recessed lower jaw
  • A tongue that falls too far back
  • Airway obstruction, making breathing difficult

It wasn’t long before UW Health pediatric craniofacial surgeon Catey Garland, MD, sat down with Nicole and Eric to discuss a remedy – a rather jarring sounding procedure called jaw distraction surgery.

“For babies like Titus, this surgery lengthens the jaw, freeing up more upper airway space so he can eat, breathe and sleep normally,” explains Dr. Garland. “We do this by carefully separating the jaw and inserting what we call a distraction device. It has two small rods attached to either side of the jawbone. The other end of the rods, which slightly protrude from the side of the face, have a screw on the end. Twice a day for about two weeks, a doctor or nurse gently turns each screw, further separating the bone, millimeter by millimeter. During the hours between the screw adjustments, the jawbone naturally grows to fill in the gap and the jaw slightly lengthens. Once the jaw is extended far enough – usually a few months later – the baby comes back and we remove the distraction rods.”

To Nicole and Eric’s ears, this all made sense. They had all the confidence in the world in Dr. Garland and her team. Still, the idea of putting their baby through such a big surgery was overwhelming, as it would be for any parent.

Pager was Mom and Dad’s Lifeline During Surgery

Titus was not quite 2 months old on Feb. 25, 2019, the day Nicole and Eric kissed their baby boy goodbye just before he was taken to the operating room. For the next few hours, their lifeline would be an electronic pager that periodically flashed short updates such as:

“Surgery is progressing. Titus is continuing to do well.”

“Dr. Garland is finishing up. Please head back to the operating floor.”

Late that afternoon, Dr. Garland met with Nicole and Eric, assuring them that Titus did great.

“Everything went according to plan and Titus’ vitals stayed strong throughout surgery,” says Nicole. “Tears of joy and relief came to our eyes knowing that things went so well.”

Baby Titus made it through but recovering from such a massive surgery would have its share of bumps along the way. For the next seven days, he was in a medically induced coma, tethered to a ventilator and countless tubes and wires.

By Day Five in the pediatric intensive care unit (PICU), Dr. Garland asked Nicole if she wanted to try turning the screws on Titus’ jaw distraction rods herself.

“Seriously?” Nicole said.

Not hesitating for long, Nicole gave it a try.

“It was surreal,” she recalls. “I felt the clicking, which was kind of eerie, but it made me feel like I actually did something to help open my son’s airway.”

Family Adjusts to ‘Studio Apartment’

After a week in the PICU, Titus was moved to a regular hospital room on the P4 Unit – a place that Nicole and Eric would begin calling their family’s new “studio apartment.” With two other children – ages 8 and 5 at the time – life was chaotic, but the Nee family made it work, thanks to lots of support from family and friends.

“Thankfully, we only live 30 minutes away, so we managed. I slept at home a couple of nights when Titus was in the PICU, but once he moved to P4, I spent every night in his room while Eric headed home each day to care for our two other kids,” Nicole says. “It wasn’t easy, but Eric and I would keep reminding ourselves, ‘It’s treatable, it’s curable and we have a plan.’ “

After more than seven weeks in the hospital, Titus finally got to go home, where he would continue to heal.

In July 2019, Titus’s jaw had grown to the point where Dr. Garland could take him back to the operating room and remove the metal rods from his jawbone.

Six months later, in early 2020, Dr. Garland performed the cleft palate repair surgery to close the gap in the roof of his mouth. Like all children born with a cleft palate, Titus will return for follow up care, perhaps until high school.

“We will keep a close eye on him, especially to ensure proper speech and language development,” says Dr. Garland.

Can’t Say Enough About Their Baby’s Care

Reflecting on all the stress of the past 14 months, Nicole and Eric could not be more grateful for the care their son received.

“From the doctors to the nurses to PT, OT, and even Dan who runs the hospital café store, everyone was so wonderful to us,” Nicole said. “I’ll never forgot one day Dr. Garland brought me a cup of coffee and some chocolates and just sat with me for two hours. It didn’t even feel like doctor and patient, but more like two friends.”

Nicole and Eric also appreciate how much they as parents were included in the daily rounds when the doctors and nurses involved in Titus’ care would discuss the plan for the day.

“You always want to advocate for your child, but you don’t want to have the big ‘X’ on your chart as the crazy lady,” Nicole says with a laugh. “Really, though, I am so thankful not only for the amazing care, but the great relationships that made so many people at the hospital feel like family.”

Stephanie’s Story

She’s truly a miracle, but just call her Stephanie

Stephanie Schuldes was not expected to live as a baby. That she survived at all was truly incredible. That she is about to turn 29 years old is nothing short of a miracle.

***

It was early 1991. Baby Stephanie was so pale as an infant that her grandmother instinctively knew something was wrong.

“We’re white people,” said Stephanie’s mother, Susan, trying to convince herself that her baby’s white-as-snow appearance wasn’t that abnormal.

“We’re not this white,” said Susan’s mother, Grandma Bonnie Spiegelberg.

As they were visiting Susan’s sister in Wausau, Wisconsin, the family took their 7-week old infant to a local pediatrician.

“I don’t know what’s wrong with this baby, but she is very ill and needs to get to a specialist right away,” said the doctor.

While the pediatrician started a series of tests on Stephanie, Susan instantly realized how sick her baby was.

“She’s got leukemia,” she told her mother.

Soon, Susan’s instinct would be proven correct. Stephanie was flown by helicopter to Madison, where the on-call UW Health pediatric hematologist/oncologist — Paul Gaynon, MD – managed the situation at University of Wisconsin Children’s Hospital, the forerunner of today’s American Family Children’s Hospital.

“I was told there was a baby in the pediatric intensive care unit (PICU) with pneumonia and a high white blood count,” recalls Dr. Gaynon, who currently practices at Children’s Hospital Los Angeles.

It was leukemia – and it wasn’t good

“I first attributed Stephanie’s high white blood count to pneumonia, but when I learned that the count was more than 500,000 – normal is 5,000 to 10,000 – I knew she had acute lymphoblastic leukemia (ALL) and the outlook was not at all good.”

Stephanie’s blood was drawn into a syringe and Susan could barely believe her eyes.

“Her blood looked like lemonade,” Susan says. “It was virtually all leukemia cells. There were almost no visible red blood cells.”

As Dr. Gaynon told the family, most childhood cases of acute lymphoblastic leukemia are diagnosed at preschool age or older. Infant ALL is very rare, occurring in perhaps 100 babies per year in the US. Even today, only about one-third of infants who are diagnosed at less than 3 months of age survive.

Christian Capitini, MD, a UW Health pediatric hematologist/oncologist, says most infants have a gene rearrangement called KMT2A that helps make the cancer very aggressive. “By the time a child is age 1 or older,” he says, “the KMT2A gene is present perhaps only 5 percent of the time.”

“This means,” adds Dr. Gaynon, “that older kids with ALL can be more easily treated and better tolerate the treatment – difficult as it may be,” he says. “Infants, however, are at great risk for serious neurocognitive side effects and present great challenges with regard to nutrition, infection and diaper care.”

Susan Schuldes could barely take in all this information she was hearing. All she knew was that her baby was critically ill, and – this was life before cell phones — she could not reach her husband, who was on a fishing trip in northern Wisconsin.

“A neighbor went out on a boat and found him,” Susan says. “When he finally got to a phone, my sister told him about Stephanie, and he drove to Madison immediately.”

As Dr. Gaynon and the Schuldes family weighed the magnitude of the situation, it was impossible to look more than even a few hours ahead.

Stephanie begins experimental chemotherapy protocol

They agreed to a then-experimental chemotherapy regimen that included Methotrexate, a drug that interferes with the reproduction of cancer cells. Because she was so young, Stephanie was not given radiation therapy because of the high risk for brain damage.

She was initially hospitalized for 30 days and repeatedly returned to Madison for chemotherapy over the next 2 ½ years. During several of these hospitalizations, Stephanie would sleep almost 24 hours a day for 7 to 10 days.

“At the time we gave Stephanie her maintenance chemotherapy, it was done by injection, which we called ‘getting a poke’ to kids,” says recently retired UW Health pediatric hematology/oncology nurse practitioner Sharon Frierdich, “Stephanie would sit on her mom’s lap and listen to a cheerful song from my Mickey Mouse watch, which would distract her.”

Against long odds, Stephanie’s chemotherapy did its job and she reached remission. By age 12, she was pronounced cancer-free. Stephanie had a few physical delays as a toddler, but otherwise experienced no ill-effects from her disease or treatment.

The miracle of 29

The incredible miracle about this little girl, however, lies in a simple number: 29.

The little baby few thought would survive in 1991 will – incredibly — turn 29 years old on her next birthday in March 2020.

Stephanie grew up with her family in Appleton, Wisconsin, graduated high school with a 4.0 grade point average and graduated Phi Beta Kappa from the University of Wisconsin-Madison. She also earned a master’s degree from the University of Minnesota – Twin Cities and works in Wisconsin as a licensed speech-language pathologist in pediatrics. During her free time, Stephanie swims, runs and spends plenty of time enjoying the outdoors.

“My treatment was finished before I turned 3, so I’m lucky that I don’t remember the bad parts,” says Stephanie. “Over the years, I came in for check-ups in the pediatric cancer Caring for Life Clinic until age 25. I looked forward to seeing my nurse, Sharon, every visit.”

Stephanie knows how lucky she is, especially because so few babies diagnosed with leukemia go on to live such a normal, healthy life.

“There really is nothing that stops me from doing what I want to do,” she says. “To come away from what I went through being cured and without severe side effects is almost inconceivable.”

A Walking Miracle

If you met Stephanie Schuldes, you would never know that she is a genuine walking miracle. Her father, Michael, calls Stephanie his personal hero.

“She taught me that some things in life are really important, while others may seem that way but, when given time to reflect, are not,” he says. “She also says that life is precious and to make the most of each day.”

Michael and Susan, who now live in Waukesha, Wisconsin, know what it means to give back, having spent a decade on the board of the Wisconsin Chapter of the Leukemia & Lymphoma Society. They also ran a golf outing benefiting that organization for 15 years.

Reflecting on those anxious days and nights with their little girl during cancer treatment, the Schuldes family will never forget what UW Health did not only for Stephanie but her parents as well.

“UW saved our daughter’s life and took great care of Michael and me as parents,” Susan says. “Stephanie has a couple of physical scars, but because she was so young, her father and I have all the emotional scars. Nobody would choose to go through this, but the childhood cancer team in Madison was wonderful and we are forever grateful.”

Rigby’s Story

Rigby has a long history with AFCH. His first experience with the hospital came when he was two days old and was transported to AFCH by the CHETA team. For a first time mom watching a group if doctor’s, nurses, and RT’s load my sons incubator into the back of an ambulance was the most frightening experience of my life.

Rigby spent 7 weeks in AFCH’s NICU. He arrived there on a ventilator barely clinging to the life and left a happy baby with a long road ahead of him. His first year and a half was a series of clinic visits and in-patient stays for a multitude of issues all related to his diagnosis of Prune Belly Syndrome.

On July 7th, 2016 Rigby received the gift of life from his dad with assistance from the doctor’s and surgeons of the transplant clinic. He was in surgery for seven hours and came home a week later a brand new boy.

Rigby is now 5 years old and while he continues to be a frequent flyer at the hospital he also is thriving because of the amazing care he has received from everyone there. Thank you AFCH for giving us our son.

Gus’ Story

When Gus was just four days old, he was transferred from St. Mary’s Hospital to American Family Children’s Hospital. He was in very grave condition. Gus was born with Eagle Barrett Syndrome. His kidneys didn’t work, his lungs were underdeveloped, and he was very sick.

“The first doctor I remember that day was one of his neonatologists, Dr. McCauley,” says Gus’ mom, Kymm. “He was wonderful, as were all of the doctors we had the pleasure of knowing during our stay.”

Gus started on dialysis when he was 20 days old, and he improved very quickly. “We had the absolute best nurses,” says Kymm. She fondly remembers nurse Crystal, Gus’ primary night nurse, who made everyone feel at home. “After 10 days in this world, she arranged for me to hold Gus for the very first time- a moment I will never forget.”

Gus’ family noted that all of the nursing staff was amazing and took care of Gus as if he were their own. “They were there through the worst and the celebrated the best with us,” says Kymm.

Gus’ family also applauds their amazing nephrology team. “Dr Redpath, and the entire team, are knowledgeable, kind, honest and have made this last year easier than I thought it would be,” says Kymm. “We have met so many great doctors from endocrinology to urology, and we have been blessed with the best. I could never thank each of them enough for saving our son’s life, and for continuing to do everything to help him thrive.”

Bill’s Story

In January 1985, Betsy Bazur-Leidy, a new nursing graduate, started her career at UW Children’s Hospital. Three months later, she had her first opportunity to serve as one of the primary nurses for an 11-year old cancer patient who had just been diagnosed with leukemia.

“Had this patient been admitted in January, I would’ve had a different mindset,” says Bazur-Leidy. “I think the timing coincided with the point when I was ready to take some ownership of a patient and feel like I could be a primary nurse to somebody who was going to be hospitalized for a while.”

The patient, Bill Yerges, stayed in the hospital from March to July that year, enduring intensive chemotherapy and radiation treatments and, eventually, a bone marrow transplant. During this challenging time, he and his family established strong bonds and friendships with the nursing staff, including Bazur-Leidy.

“He was quite the prankster and that immediately drew me to him,” states Bazur-Leidy. “But I could see something so gentle underneath it all – a little boy inside all the other stuff. I connected with that and got along with his family really well.”

Shortly after his bone marrow transplant, Yerges went home cancer-free.

Patient Becomes Provider

Many years later, while attending a going away party for a coworker, Bazur-Leidy was introduced to April Yerges, another nurse who was described as someone she should know and would really like. 

“I thought that was such a nice thing to say,” states Bazur-Leidy. “I told her I took care of a young patient years ago with the same last name. April said, ‘That’s my husband, Bill,’ and I couldn’t believe it.”

Bill Yerges then walked up—both he and Betsy recognizing each other instantly—and they hugged. During their reunion, Bazur-Leidy learned that Yerges himself had become a nurse.

“Someone either chooses nursing because they don’t know what they don’t know and they’re about to find out, or they do know because of a positive experience and the seed was planted long ago and it took some time to come to fruition, like Bill,” states Bazur-Leidy. “I hope I helped plant that seed in some way because today, he’s awesome with his patients. They all love him.”

Surprisingly, nursing wasn’t Yerges’s first choice for a profession.

“I attended school for music and animal husbandry before I pursued nursing,” he states. “I really don’t know specifically what brought me to nursing, but I think my background and own experience led me back to this place. I’ve always enjoyed an emotional interaction and vulnerable people tend to be more open to something new or something that’s bigger than what they’re dealing with. The experience of reaching out to others and helping them through the road to recovery or wellness really became a passion.”

Experience as Patient Informs Profession

As one would expect, Yerges puts his former patient experience to good use in his current practice.

“I think I have a little more sympathy and empathy for kids and I think it puts me in a position to challenge patients to do things they might not have thought they could do, or overcome challenges of their diagnosis that they didn’t think they could overcome,” states Yerges. “Children are resilient and they’re going to overcome things. When they do that, I think I connect with that and try to give them opportunities early on and say, ‘This is not a barrier for you or us – it doesn’t change who we are or your inner person – it’s going to be a bump in the road and we’re going to deal with it.'”

“Bill has this beautiful combination of empathy and ‘pick yourself up by the bootstraps,'” states Bazur-Leidy. “It’s an extraordinary recipe. He lets his patients have a bad day and tells them that tomorrow, they’re going to turn it around together and he’s going to help them figure it out. That’s a real gift.”

When asked why nursing is so special, Bazur-Leidy reflects back on a game she recently played with friends where everyone had to choose another profession.

“When it was my turn I said that I don’t identify nursing as a profession,” she states. ” I am a nurse. It’s just who I am and how I identify myself.”

For Yerges, passion is at the core of everything.

“Nursing encompasses so much—compassion, a high degree of education and science that you have to be able to apply, and teaching. You spend your day educating, sympathizing, healing, counseling and entertaining. It’s who you are and it’s also what you do. It’s passion that keeps growing and learning that never stops.”

Yerges and Bazur-Leidy continue to be great friends who currently practice at American Family Children’s Hospital along with Yerge’s wife, April. And their bond has even expanded to the next generation. 


“My daughter is also a nurse here and she told me that one day, ‘This guy practically tackled me in the hallway,'” laughs Bazur-Leidy, referring to the first time Bill ran into her daughter. “She and Bill became fast friends and now he teaches her. Talk about beyond full circle!”

After 14 years as a pediatric nurse and care team leader at American Family Children’s Hospital, Bill Yerges took on a new challenge in 2018, becoming a Transplant Coordinator with UW Health – one of the nation’s leading transplant programs. In this role, Bill collaborates with members of the transplant program to provide patient care for individuals who may need a solid organ (kidney and pancreas) transplant or have received a transplant. He continues to provide pediatric care, by assisting in the transplant coordinator for pediatric kidney transplant patients, interacting with Transplant surgeons, UW Health physicians, fellow nurses, patients and family members. 

Broc’s Story

In January of 2019, my 13-year-old son was referred for an echocardiogram.  We had switched our health insurance and changed our family doctor. Our new physician ordered an echo as soon as he saw how long our son has had high blood pressure – nearly his whole life.

An hour and a half later I got a phone call that dropped me to my knees….”your son has a blockage in his heart and we are referring your case to Madison to the children’s hospital.” The next couple of months were scans, appointments and plans to help our son Broc.

In April of 2019 our son underwent his first heart surgery for a blockage in his aorta. During this time we met so many wonderful doctors, nurses and staff at American Family Children’s Hospital. Our cardiologist Dr. Nick Von Bergen has been nothing but amazing. His entire team is absolutely wonderful. They all talk to Broc and get to know him, explain things to him so he will understand and ease his fears.

Dr. A was our surgeon… I have no words to describe the wonderful care he and his team gave my son. Seeing Broc spend 11 days in the hospital after heart surgery, a lung collapse and lots of fighting was the hardest thing for me to watch my son go through. I cried myself to sleep next to his side nightly, but the staff there always made sure I took time for myself, gave me opportunities to get some rest, and explained things to me so I understood.

Broc had the most amazing nurse there…. his name was Danny, he connected with my son, encouraged him and kept his spirits up. During Broc’s first surgery they found another blockage in his heart… sadly our time at AFCH will be relived again but I’m happy to know my son will always have the best care ever. You never think you will need children’s hospital until you do!

My son doesn’t have a life-threatening illness, he plays with his friends, loves his sports and is home with me…. a luxury not all parents are able to have. American Family Children’s Hospital gave this to me and I will forever be grateful.

Brooklynn’s Story

Our beautiful daughter, Brooklynn, was rushed to the emergency department at UW Health after being seen by her primary physician. We were told that Brooklynn was diagnosed with Type 1 Diabetes and needed immediate medical attention for diabetic ketoacidosis.

All of our lives changed at that very moment. AFCH is now part of our extended family. The doctors, nurses, nutritionists, child life specialists, volunteers and therapists all worked together to help our very sick little girl. They cared for Brooklynn and helped us all learn how to live with this new diagnosis, giving us love and support, just like a family member would do.

The endocrine team is absolutely amazing. They made Brooklynn feel like royalty and us, as parents, feel like Brooklynn was their only patient! They even called once we were at home to check in to make sure we were all doing ok with our new “normal”.

Without the amazing team and quick medical action at AFCH Brooklynn would not be the spirited and sparkly 8 year old she is today.

Because of the on-going remarkable care Brooklynn receives from her endocrine team, she is able to do all the things she loves: going to school, dancing and being a typical little girl. We are forever grateful! Thank you AFCH!

Miles’ Story

This guy has grown a bit since we shared his story. Miles was adopted at just 16 days old and has had four open-heart surgeries, with his last on May 4, 2018 at age 4.5 years. He is an energetic and active kindergartner who loves school. He plays t-ball, kickball and basketball, and his family loves to go camping, hiking, kayaking and biking. Add to that list some Miles-and-dad time hunting and fishing. His family enjoys traveling and one of Miles’ favorite places to visit is the Great Smoky Mountains.

His mom says “Miles is truly a heart warrior but unless you know his condition (TOF), you’d never know all he’s been through. He is truly a blessing to us.”

https://youtu.be/c-XaUIzPyJQ

Kelly’s Story

Thirty-one years ago, Kelly was an energetic, athletic 11-year-old sixth grader from Madison. Suddenly, an onset of swollen lymph nodes and exhaustion had her mother, Maury, thinking that mononucleosis might be the culprit. The truth, however, was something that turned the Cotters’ world upside down: cancer, or more specifically acute lymphoblastic leukemia (ALL).

As scary as the news was, Kelly’s chances of survival took a sharp drop (from about 75 percent to 25 percent) once her leukemia quickly relapsed late that summer, just four months after her original diagnosis. “We are just going to have fight harder this time,” said Kelly’s dad, John, as the family left the old UW Children’s Hospital after learning the unsettling news.

Her best chance for survival was to undergo an invasive procedure known as a bone marrow transplant, a form of treatment that could only work if she had a matching sibling. It was only a one-in-four chance, but Kelly’s brother, Adam (then 8, now 39), was a perfect match and agreed to be his sister’s bone marrow donor. Doctors would need to extract marrow more than 200 times from the back of Adam’s hipbones.

On October 26, 1988, the morning of the transplant, Adam – holding his favorite teddy bear while still in his pajamas – was approached by his mother.

“Adam, are you scared?” said Maury.

“No, Mom,” her son replied. “This is the best day of my life.”

In time, Kelly’s bone marrow transplant was deemed successful. Now 43, Kelly lives in Libertyville, Illinois, with her husband of 15 years, Bill Pappano, a research scientist, and their sons Enzo, 10 and Teo, 8.

Kelly’s unassuming, modest manner belies her undying commitment to helping others. No one could have predicted how this magnanimity would blossom over 30 years, but consider the first clue: a 7th-grade assignment asking Kelly to put on paper some thoughts about her cancer experience. “One day,” Kelly wrote at age 11, “I would like to raise millions, or I guess I’d settle for thousands, of dollars for childhood cancer research.”

Little did she know, how prophetic this wish would become. Even before her hair grew back following treatment, Kelly began to execute her plan, while still in the hospital. Step one was the “Stomp-a-thon” – a school dance she organized that raised $20,000 over two years for leukemia research. Kathryn Murphy, a fellow childhood leukemia survivor currently employed by American Family Children’s Hospital as a patient-family liaison, recalls meeting Kelly at the Stomp-a-thon.

“I was only 8 at the time, but I remember feeling so inspired by what Kelly did that I organized my own fundraising carnival that we put on for 10 years,” Kathryn said.

By 1993 at age 16, Kelly co-founded Kids With Courage, an incredibly impactful reunion of childhood cancer survivors and their families that takes place every five years. The event attracts nearly 1,000 people, including supermodel Cindy Crawford, whose little brother, Jeffrey, was treated at the UW before dying of leukemia at age 3 in 1975.

A Kids With Courage book, co-authored by Kelly and Maury, became a treasured resource for kids and families at children’s hospitals around the nation.

While a University of Wisconsin-Madison undergraduate, Kelly developed one of the very first information resource websites designed exclusively to address the long-term issues for childhood cancer patients and their families following treatment. Called Outlook, the site was prominently recognized by the National Cancer Institute and supported financially by several UW Health entities.

By 2003, following graduation from the UW Law School, Kelly moved to Washington, D.C., to lobby for more pediatric cancer research funds as Director of Legislative Affairs for CureSearch for Children’s Cancer. There, she helped secure $8 million in federal childhood cancer research support and successfully pushed for the Conquer Childhood Cancer Act of 2006.

By 2008, Kelly and her husband Bill moved back to the Midwest, where she currently works as a grant writer for the United Way of Lake County in suburban Chicago. There, she began to fulfill one of her greatest personal aspirations – parenthood.

“I knew from the time of my transplant that infertility was a potential side effect,” Kelly said. “So, when Bill and I decided to have a family, we began exploring adoption. With the help of an adoption agency in Chicago, we found both Enzo and Teo, and they have given me the most meaningful role of a lifetime – being a mom.”

Paul Sondel, MD, PhD, head of pediatric hematology/oncology at UW Health’s American Family Children’s Hospital, says that giving back, whether as a mother or advocate for childhood cancer patients and research, is truly a lifetime commitment for Kelly.

“The instant connection Kelly makes with kids and other cancer survivors is so impactful,” said Dr. Sondel, who was Kelly’s pediatric oncologist during the late 1980s and today serves with Kelly on the St. Baldrick’s – Stand Up to Cancer Pediatric Cancer Dream Team, a nationwide research consortium involving the use of immunotherapy to treat childhood cancer.

My youngest, Mateo, is now the same age that my brother was when he was my donor. And, my oldest, Enzo, is nearing the age I was when I was diagnosed. Seeing the pediatric cancer experience now through my perspective as a parent, gives me the continued motivation to stay involved and help make a difference for other children.

Kelly’s success in the fight against childhood cancer, Sondel says, may be explained not only by her personal story, but her personal style.

“Kelly has a very gentle, yet persistent way that can be very persuasive,” Sondel said. “She is so gifted at attracting attention for this cause without making it about herself personally.”

Reflecting on the 30 plus years since her daughter’s life-saving bone marrow transplant, Kelly’s mom, Maury, glistens in appreciation of the life-cycle milestones that have occurred since Kelly was cured.

“I cherish them all – high school, college, law school, her success in Washington lobbying for pediatric cancer research, marriage, and now children,” said Maury. “These would make any mom very proud, but I especially relish those who say that Kelly helps them get through the hardest of times. In her quiet way, Kelly’s empathy and wisdom have made such a difference to so many who have faced so much.”

Tanner’s Story

In April of 2018, Tanner Kleist was living his normal life by helping out on the farm when he was trampled by 10-15 adult female cows. He was rushed to American Family Children’s Hospital via UW Med Flight with a 5% chance of survival. He needed three emergency surgeries to repair damage to his brain, kidneys and liver.

Tanner had a serious liver injury. Dr. Peter Nichol called it lethal. “The last three or four times I’ve seen this, the child has died,” he said. 

Nichol performed Tanner’s first of four surgeries, essentially doing damage control to stop the bleeding in a liver that had been ripped in two. He has 31 others at his side, calling in transplant surgeons to help with the procedure. 

“This was 32 people pulling together for one kid,” Dr. Nichol said. “This is what we’re supposed to do, right? This is why we’re here.”

Tanner is now a healthy 10-year-old and is living his life to the fullest.

McKinnley’s Story

Miracles happen every day at American Family Children’s Hospital. And McKinnley was certainly one of them. Born 8-weeks premature with an incredibly complex heart defect, McKinnley spent a lot of time in our NICU before she was big enough for the open heart surgery she needed to correct a transposition of her arteries. 

“It was incredibly heartbreaking to have such a small child in your hands and not know what the outcome will be,” says dad Jeff. “Surgery felt like forever, the longest 5-6 hours of my life, but McKinnley made it through. Now she’s four and oblivious to what happened to her.”

https://youtu.be/UBHYq_r0FM8

Aviva’s Story

Eleven years ago, Sam Gellman was sure he was going to lose his 14-year-old daughter, Aviva. Within just a week, she was diagnosed with liver disease, and was admitted to American Family Children’s Hospital where she soon became comatose due to the toxins entering her bloodstream. “I was watching her die,” he says. “In fact, by the end, I was sure she was going to go.” The only chance she had was to receive a liver transplant from a living donor — and Sam just happened to be a perfect match. Tony D’Alessandro, MD, pediatric transplant surgeon at UW Health, performed an emergency transplant, and miraculously, Aviva recovered.

Because of her father’s gift of life, Aviva finished high school and college at the University of Minnesota Twin Cities. After college, she worked for several years in the Madison area as a legal assistant and as an intern at the Center for Railroad Photography & Art. She is now pursuing her Master of Public Health degree at Boston University School of Public Health. “I’ve always loved going to school and I knew I wanted to go back to school for something,” says Aviva, now 25. “Having a transplant was a big factor in my choice to go into public health. I chose it because the opportunities for a career are so varied.”

Aviva has been fortunate to have no major health problems since her transplant. Because of that, she has felt more comfortable traveling extensively — since her transplant, she has visited 16 different countries, including Croatia and Montenegro. “Immunosuppression can be a little challenging in some areas,” she says, “but I enjoy the challenge of making that work. If I’m traveling in a different country, I’m very careful with what I eat and drink, and what environment I’m sleeping in.”

Of course, the transition from having Aviva close by to having her hundreds of miles away has been challenging for Sam and her mom, Julie Plotkin. “Kids are so central to your existence, and then one day they walk out the door and move somewhere,” says Sam, who is a professor of chemistry at the University of Wisconsin-Madison. “But I am grateful I still have her to talk to and give a hug and kiss to whenever I see her.”

While the recovery was his donation took some time, Sam has not experienced any lasting effects at all — other than the scar. In fact, he went on an intense hiking trip with Aviva in Yellowstone National Park last summer. “I worried that I would be able to keep up with her,” he says, “but during the trip, she turned to me and said, ‘Dad, you have more stamina than my friends.’ So I guess I’m still doing OK.”

https://youtu.be/1WFnXiN5HKc

Parker’s Story

Imagine being a child filled with an amazing zest for life but so physically limited that you have difficulty moving your arms and legs. You are confined to a wheelchair.

Imagine, too, having to overcome many bouts of pneumonia, a very difficult spine surgery and, because you sometimes have trouble swallowing, your lungs are compromised. You also receive much of your nutrition through a feeding tube because of the risk that many solid foods pose for respiratory complications.

Now imagine you have grown to be a teenager – 14 to be exact – and despite all your physical limitations, every kid in school wants to be around you. Not only are you a social butterfly, but you always see the positive in every situation. Sprinkle in an infectious smile, a little funky color in your hair, your very own “Glitter Party” YouTube channel and there is only one young woman to make this bit of imagination come true – Parker Herman.

SMA: A Diagnosis No Family Wants to Hear

Parker was born with a rare, incurable neuromuscular disease called SMA, or spinal muscular atrophy. Children with this disease cannot control their muscles because they lack an essential protein related to certain nerve cells, causing muscles to become very weak. These kids typically become very fatigued, and things most of us take for granted – such as walking, eating and even breathing — can be an incredible challenge.

For Parker, an 8th grader who lives about an hour’s drive from Madison in Juneau, Wisconsin, life is not easy, but with top-notch care from her UW Health medical team and lots of love from her single parent father, Matt, and grandparents Ellen and Dan, Parker has overcome many hurdles.

“No parent ever wants to be told that their child has SMA,” says Mary Schroth, MD, a pediatric pulmonologist who cared for Parker for nearly 10 years at UW Health’s American Family Children’s Hospital in Madison before becoming chief medical officer at Cure SMA in 2018.

When she began caring for kids with this disease more than 25 years ago, Dr. Schroth knew little about SMA. She has learned – working side by side with her patients and their families – how to make the lives of countless children better, and her reputation in the field has generated many patient referrals from hundreds of miles away.

“We could do much better.”

“Not that long ago,” says Dr. Schroth, “parents of newly diagnosed SMA babies were told to take them home and love them and that their lives will be short – usually less than 2 years,” says Dr. Schroth. “Understandably, these families found these words incredibly devastating. I thought we could do much better.”

Without question, the journey for hope has been sluggish. Until very recently, medical treatment for SMA patients – aside from supportive care – has proved elusive. Yet, as Parker shows us, a positive attitude can pay off.

Since being approved by the Federal Drug Administration in late 2016, the first-ever SMA therapy, known as Spinraza™ (nusinersen) has been improving the quality of lives for children like Parker.

“My energy has totally increased,” Parker says. “Before, I would be wiped out and totally exhausted after school. Now I can stay up until 8 pm with all the energy in the world.”

Even more promising, says Dr. Schroth, additional and potentially even more powerful SMA therapies are now in the pipeline. The key, she says, is beginning treatment as soon as SMA is diagnosed.

“Every day that a baby with SMA goes untreated means more loss of motor neurons,” says Dr. Schroth. “Fortunately, newborns are now starting to be tested for SMA at birth so that if a baby is diagnosed, treatment can start immediately, and we can hopefully limit the nerve and muscle damage. Several states have already begun testing babies for SMA at birth and within a few years, we think most newborns across the country will be tested.”

Parker Dreams Big

For Parker, who loves summer camp, video games and all things glittery, dreaming big is something wired into her very being. As for what she aspires to pursue later in life, anything from fashion design to genetics are on Parker’s list. She also finds great fulfillment in lifting the spirits of other kids with SMA and hanging out with her friends who “don’t see the wheelchair; they just see me.”

Stay positive, she tells others who have walked in her shoes, even though times can be hard.

“Technology is changing, and there are ways it might help,” she adds. Dr. Schroth agrees and finds Parker’s resilient outlook the perfect allegory for the promise of current and future SMA treatments.

“I wasn’t sure I would see these advances in my lifetime,” says Dr. Schroth. “I am also honored to learn so much from children like Parker. She is truly a light who shines brightly.”

Tyler’s Story

Tyler Hall of Baraboo, Wisconsin will one day learn how he overcame odds that were heavily stacked against his survival.

Born in 2006 in Sauk City and transferred to Madison four days later, Tyler was ultimately diagnosed with life-threatening heart failure resulting from a very rare condition known as MCAD deficiency, a genetic disorder that substantially inhibits the body’s ability to use fat as a fuel.

“MCAD deficiency is diagnosed in about one in 15,000 children,” says Greg Rice, MD, a pediatric genetics specialist at the Waisman Center. “All Wisconsin newborns are screened for MCAD and 46 other disorders by the State Laboratory of Hygiene. Most babies diagnosed with MCAD deficiency present at 2 to 3 months of age and do not go into crisis before treatment begins.

“What put Tyler in such great jeopardy, however,” Rice says, “was his presentation of MCAD deficiency just three days after birth. As a result, the accumulation of unmetabolized fat was causing his heart to fail. About a dozen cases have been reported throughout the world similar to Tyler’s and most of those infants did not survive.”

Essential to getting Tyler on the road to recovery at UW was a heart-lung bypass machine known as ECMO (extracorporeal membrane oxygenation). 

“Use of the ECMO circuit allowed Tyler’s heart and lungs a chance to heal during a very critical period,” saysTom Brazelton, MD, a children’s hospital critical care pediatrician and medical director of the Pediatric ECMO Service.

“ECMO is essentially a partial heart and lung bypass machine that allows us to support the vital functions of the heart and lungs in dying infants and children – it is truly a last resort – and only available at children’s hospitals that offer the highest level of care.”

A week later, Tyler was able to come off the ECMO machine and begin receiving a special formula orally. A month later, he was healthy enough to go home and his long-term outlook is excellent.

Brazelton, who has seen his share of remarkable cases in the Pediatric Intensive Care Unit, will have a hard time forgetting Tyler.

“Tyler is alive and, even with his diagnosis of MCAD deficiency, should have a normal existence,” Brazelton says.

Tyler is doing very well these days. To look at him now, you would never know how sick he was as an infant. 

“He comes to the Medical Genetics Clinic at the Waisman Center (across from American Family Children’s Hospital) once a year for a blood draw, but that’s it,” says his mother, Heather. “He has been a poster child for good health lately, and we are so grateful.”

Now 13, Tyler is an 8th grader who is looking forward to starting high school in the fall of 2020. He is especially good at math and writing – two skills that should help him immensely for years to come. 

An avid baseball fan, Tyler also loves kayaking, riding UTVs and hunting. He bagged a deer during his first season in 2018. 

https://youtu.be/f91KhxCuZ6A

Madisen’s Story

Young Madisen is a self-admitted “tough cowgirl.” At birth, it was discovered that Madisen had a bicuspid aortic valve stenosis. She received her first surgery (balloon dilations) to better regulate blood flow from her heart into her aorta. Using our low-dose radiation imaging technology, our pediatric heart team helped her get back in the saddle without a worry.

Today, Madisen is 12 and still has aortic valve regurgitation and aortic stenosis – but both cases are considered moderate/mild. She stays very active playing volleyball, soccer and riding her horse. She is also in band, choir and performs in plays. “She shows no symptoms and is a very outgoing, happy girl,” says Madisen’s mom Amanda. 

She still needs a new heart valve as she still has leakage, but the family is hoping that the new valve won’t be needed until she is done growing. Amanda says, “She’s a miracle!” 

https://youtu.be/4ql5R0m27Ds