Children’s Health

Physicians know delivering bad news is part of the job. But a diagnosis of epidermolysis bullosa (EB) can be “terrifying,” says University of Minnesota pediatric oncologist Jakub Tolar, M.D., Ph.D. EB causes the skin to slough off at the slightest touch. Wounds don’t heal, fingers fuse together, and eventually patients are unable to eat and are wheelchair bound.

When 12-year-old Sabrina Ness takes the stage, her soulful, bluesy voice startles listeners. Think Norah Jones or Adele. Her songwriting is just as mature. “All of my songs are about making a difference in the world,” says Ness.

It’s Tuesday and 4-year-old Addison Brynteson has just finished her weekly medical checkup. Next stop: “Anywhere with French fries and chicken strips,” jokes her dad, Joe. Last fall, this lively preschooler was diagnosed with severe aplastic anemia, a rare condition that prevents normal blood-cell production.

Grace O’Masta has come a long way from the devastating day in spring 2008 when her parents were told their month-old daughter likely wouldn’t survive the night. Born with an enlarged and weakened heart that wasn’t capable of pumping enough blood on its own, the Eagan, Minn., girl was living at University of Minnesota Amplatz Children’s Hospital, hooked up to the Berlin Heart—a then-experimental ventricular assist device— and on the waiting list for a transplant.

Don’t miss Neurofibromatosis (NF) Awareness Night at Target Field on May 18, 6:10 p.m., where the Minnesota Twins will take on the Boston Red Sox.

The latest issue of Children's Health is now available in print and online.

They knew some of their ideas would raise eyebrows. But the clinicians who got together two years ago to plan renovations for the two-floor Child and Adolescent Mental Health and Intensive Treatment Center at University of Minnesota Amplatz Children's Hospital felt that a big change just might make a big difference for kids.

Grace O'Masta has come a long way from the devastating day in spring 2008 when her parents were told their month-old daughter likely wouldn't survive the night.

John and Nancy Lindahl are two of the University of Minnesota’s biggest cheerleaders. Together the two alumni successfully led a $90 million fundraising campaign for TCF Bank Stadium. Nancy also is a member of the University of Minnesota Foundation Board of Trustees, while John serves on its heart fundraising advisory committee. And through their many connections to the University over the years, they’ve only grown to appreciate it more.

One of the most important steps in pushing medical science ahead is funding talented, young researchers who bring new ideas and approaches to solving health problems. That's the thinking behind the University Pediatrics Scholars Award, which has been given annually since 1990 to at least one promising pediatrician-researcher who's getting a fledgling lab up and running.

We're celebrating University of Minnesota Amplatz Children's Hospital's history of achieving medical firsts and breaking records tied to improving outcomes for children by attempting to break another record at WineFest No. 18.

Karen Kaler, wife of University of Minnesota President Eric Kaler, Ph.D., and Rebecca Kill, wife of head Gopher football coach Jerry Kill, rock babies in the neonatal intensive care unit at University of Minnesota Amplatz Children's Hospital every week.

Adopt A Rooms are customizable, private rooms designed specially for kids and their families. Bedside consoles give children command of almost everything in their spacious rooms, providing the kids a sense of control during a time when they yearn for it.

Thanks to recent legislation, you can again benefit from a popular tax-advantaged giving option.

Zach Sobiech is practically a rock star. With just months to live, the 17-year-old teen from Stillwater, Minn., started writing songs to say goodbye to his family and friends. He never expected that his songs would make him world-famous. On Saturday, February 16, Zach and his friends will perform at a sold-out benefit concert at the iconic Varsity Theater in Minneapolis. Ticket sales will benefit the Zach Sobiech Osteosarcoma Fund through Children's Cancer Research Fund in support of leading-edge research at the University of Minnesota.

Pediatric blood and marrow transplant physician Jakub Tolar, M.D., Ph.D., has been named director of the University of Minnesota’s Stem Cell Institute.

The Grand Lodge of Minnesota and Minnesota Masonic Charities have jointly sponsored an Adopt A Room at University of Minnesota Amplatz Children's Hospital, continuing the Masons’ decades-long commitment to improving children's health.

John A. Sullivan, center for the Minnesota Vikings, is donating $150,000 to make a new University of Minnesota Amplatz Children’s Hospital playground possible. To support the project, Vikings linebacker Chad Greenway has donated $25,000 through his Lead the Way Foundation, and the Minnesota Vikings have contributed the remaining $25,000 necessary for the $200,000 project. Sullivan announced his support at a dedication ceremony on October 30.

At 16 and more than 300 pounds, Steven was in a desperate situation. His weight was taking a toll on him physically and emotionally. He suffered from sleep apnea, “excruciating” headaches, showed signs of type 2 diabetes and was depressed.

Just a few minutes of light activity left him out of breath. He became housebound, spending much of his day in his room and in bed, taking classes through a home program.

Margaret Semrud-Clikeman, Ph.D., sees the pain and frustration often when she works with children who have autism spectrum disorders (ASDs) and nonverbal learning disabilities. The preteens and teens participating in her studies often blame themselves for their outbursts, peer clashes, and trouble making friends -- their difficulty in controlling their emotions in general.

Over the summer, those kids got a whole new perspective on their behavior from the functional MRI brain scans taken by Semrud-Clikeman. With that powerful glimpse inside their heads, the kids saw that their brains may be larger in key spots and "fire" differently in certain situations.

The idea of applying computer science to the traditionally medical domain of autism spectrum disorders (ASDs) started with one provocative question: What if cameras and computers could capture and process information that even the most expert of experts can't?

Children born today will likely be the first generation ever to have a lifespan shorter than their parents'. It's largely because of one of today's most urgent public health concerns: childhood obesity.

When Cara and Michael Kail left home for Fairview Southdale Hospital for the birth of their fourth child late on September 24, 2010, Michael had planned to be home the next day to take their other kids to the Children's Theatre.

But a rare and very dangerous complication caused Cara to lose consciousness during labor early the next morning, which resulted in an emergency C-section birth. At one point, neither Cara nor new baby Christopher was breathing or had a pulse.

Little compares with the heartbreak pediatric oncologist Jakub Tolar, M.D., Ph.D., sees working with children who have epidermolysis bullosa (EB), a fatal disease that can cause the skin to slough off at even the slightest touch.

And though he was part of the pioneering University of Minnesota Amplatz Children's Hospital team offering promising but risky blood and marrow transplants aimed at curing the disease, he is now focused on finding a safer treatment alternative.

For the fifth consecutive year, University of Minnesota Amplatz Children's Hospital has been named one of the best children's hospitals in the country, according to U.S. News & World Report. It received accolades for its rankings in six pediatric specialties.

By the time she became a graduate student in epidemiology, Julie Ross, Ph.D., already knew she loved the lab. But a chance visit to an infant's hospital room helped put her on her life's path: researching the genetic and environmental causes of cancer, primarily pediatric cancers.

Don’t miss Neurofibromatosis (NF) Awareness Night at Target Field on September 13, 7:30 p.m., where the Minnesota Twins will take on Kansas City. Four-year-old Jacqueline Dunlap, an NF patient at the University of Minnesota, will throw out the first pitch of the game.

Ask any principal. It takes a lot to quiet an auditorium full of high school students. But when a video about the cancer research of University of Minnesota Amplatz Children's Hospital surgeon-in-chief Daniel Saltzman, M.D., Ph.D., played last February at Henry Sibley High School in Mendota Heights, the students watched in silence.

As a pediatric oncologist, Jakub Tolar, M.D., Ph.D., sees tragedy every day. But little compares with the heartbreak he sees working with children who have epidermolysis bullosa (EB), a fatal disease that can cause the skin to slough off at even the slightest touch.

"This is one of the most awful diseases I've ever seen," Tolar says.

A member of the pioneering University of Minnesota team offering promising but risky blood and marrow transplants aimed at curing the disease, he is now focused on finding a safer alternative. Two foundations led by fathers of boys who have EB will contribute a total of $450,000 for this research--if other donors will collectively match it.

Gabby Burington performs in jazz and tap dancing competitions, something her mother didn’t imagine possible when Gabby was diagnosed with juvenile rheumatoid arthritis as a toddler. But this six-year-old doesn’t let her diagnosis define her or even slow her down.

Tanner Buck, 11, is personable and polite, but plays hockey with a vengeance—he just won third place in a Wisconsin youth hockey shootout.

Tanner also has cystic fibrosis (CF) and has been treated at the University of Minnesota Cystic Fibrosis Center since he was 10 days old.

Imagine facing the devastating diagnosis that your child has a rare condition that is fatal if left untreated...twice. For Julie and Brandon Williams, their worlds were turned upside down when both of their children, Luke and Molly, were diagnosed with myelodysplastic syndrome (MDS).

Rebecca and James Michael were expecting their second child in early November. But baby Emma could only wait until July 11, when she was born at one day over 23 weeks’ gestation, weighing a mere 1 pound 6 ounces.

In his work as a pediatric oncologist, Jakub Tolar, M.D., Ph.D., sees tragedy every day. But little compares with the heartbreak he sees working with children who have epidermolysis bullosa (EB), a fatal disease that can cause the skin to slough off at even the slightest touch. "This is one of the most awful diseases I've ever seen," Tolar says.

Rebecca and James Michael were expecting their second child in early November. But baby Emma could only wait until July 11, when she was born at one day over 23 weeks' gestation, weighing a mere 1 pound 6 ounces.

While The Birthplace care team stayed with Becca at University of Minnesota Medical Center, Fairview, neonatologists immediately brought Emma to the adjacent University of Minnesota Amplatz Children's Hospital's neonatal intensive care unit (NICU), and James followed.

Cara and Michael Kail left home for Fairview Southdale Hospital for the birth of their fourth child late on the evening of September 24, 2010, Michael had planned to be home the next day to take their other kids to the Children's Theatre.

But a rare and very dangerous complication caused Cara to lose consciousness during labor early the next morning, which resulted in an emergency C-section birth, right in the labor room. At one point, neither Cara nor new baby Christopher was breathing or had a pulse.

Your annual gifts to support leading-edge research, education, and care at University of Minnesota Amplatz Children’s Hospital make a real difference to children and their families. But did you know you also can leave a legacy gift that will make a difference after your lifetime? When you include a gift to support children’s health at the University in your estate plans, your future gift will provide critical funding to accelerate the development of new treatments and cures for childhood diseases.

Gabby Burington performs in jazz and tap dancing competitions, something her mother didn't imagine possible when Gabby was diagnosed with juvenile rheumatoid arthritis as a toddler. But this 6-year-old doesn't let her diagnosis slow her down.

Gabby regularly sees University of Minnesota Amplatz Children's Hospital specialists in rheumatology and ophthalmology, whose services are now centrally located on the University's Riverside campus. Anchored by the new hospital facility, the growing children's health campus is changing pediatric care at the University.

Our Children's Health Campaign seeks to raise $175 million by 2015 to fund vital advances in research, education, and care. Learn how you can get involved at www.uofmhope.org.

Patients and families at University of Minnesota Amplatz Children's Hospital joined with local celebrities March 29 to celebrate all of the hospital's real-life superheroes--from kids and families to doctors, nurses, and child-family life staff.

Save the date for WineFest No. 17--A Toast to Children's Health, an event to benefit children's health research, education, and care at University of Minnesota Amplatz Children's Hospital, on May 11 and 12.

When Jimbo Fisher and his wife, Candi, learned last year that their youngest son, Ethan, has a rare blood disease called Fanconi anemia, they first dealt with the devastating news in private. Then the Florida State University football coach decided to use his visibility in the media to raise awareness of the disease and funding for research at the University of Minnesota.

Two Department of Pediatrics and Masonic Cancer Center researchers have been named the first recipients of endowed chairs established by Children's Cancer Research Fund. John Ohlfest, Ph.D., was named holder of the Hedberg Family Chair in Brain Tumor Research, and Julie Ross, Ph.D., has received the Suzanne Holmes Hodder Chair in Pediatric Cancer Research.

University of Minnesota pediatric neuropsychologist Jeffrey Wozniak, Ph.D., L.P., is studying the possibility that choline, a relative of the B vitamins, may improve learning and IQ in children who have Fetal Alcohol Spectrum Disorder (FASD). This research could have implications far beyond FASD.

A brand-new children's dental clinic opened this month across the street from University of Minnesota Amplatz Children's Hospital as the state's only hospital-based pediatric dental clinic and the most advanced pediatric dental clinic in the Upper Midwest.

Play experiences can help children cope with and adjust to illness and hospitalization. Child-Family Life staff can use your gifts to purchase the items our patients need most, such as toys, games, and other supplies.

Besides the Vikings' monthly visits to University of Minnesota Amplatz Children's Hospital, head coach Leslie Frazier recently announced that players and coaches have sponsored the Minnesota Vikings Adopt A Room in the new hospital, and running back Lorenzo Booker has taken a leading role in promoting the Vikings Fitness Playbook program.

Several other players—including guard Steve Hutchinson and linebackers Chad Greenway and Erin Henderson—have made special contributions of their own to the hospital.

When the Jimbo Fisher and his wife, Candi, learned earlier this year that their youngest son, 6-year-old Ethan, has a rare blood disease called Fanconi anemia, they dealt with the devastating news in private. Then they decided to use their visibility in the media to raise awareness of the disease as well as money for research at the University of Minnesota.

Suzanne (Sue) Holmes Hodder thrived on helping others. She was always happy to support her friends and even strangers through projects she believed in. And she particularly cherished her volunteer role with Children's Cancer Research Fund, an organization launched by her close friends Diana and Norm Hageboeck after their daughter Katie died of leukemia in 1979 at age 13.

Many artists begin a portrait with the eyes. Jimmy Reagan, this year’s WineFest artist, is no different. “When you’re somebody with autism, eye contact is really difficult,” explains Jimmy’s mother, Peg Schneeman Reagan.