Children's Hospital is part of the UPMC family.
Our Sites
Be safe anytime, anywhere.
To find a pediatrician or pediatric specialist, please call 412-692-7337 or search our directory.
A resource for our network of referring physicians.
For more information about research, please call our main office at 412-692-6438.
Ranked #6 Nationally by U.S. News & World Report.
When Levi Wibberley was only five months old, he progressively became unsettled and agitated. His parents thought he was just teething, but their parenting instincts told them there was a much bigger problem when they could not find a way to soothe him. They sought medical advice close to home in Australia, but most of the doctors could not find a reason for Levi’s issues. After seeing eight doctors and three visits to the emergency room, Levi worsened. He suddenly stopped eating and began to lose mobility in his extremities and his head.
At eight months, Levi was diagnosed with Krabbe Disease by a neurologist at Princess Margaret Hospital for Children in Subiaco, Western Australia.
Krabbe Disease, also called globoid cell leukodystrophy, is rare a degenerative disorder that destroys the protective coating of nerve cells in the brain and nervous system. It is caused by a deficiency of the galactosylceramidase enzyme, leading to the nerves in the brain and other parts of the body functioning improperly.
Doctors told the family that Levi was only one of four known cases of Krabbe Disease in Australia. The hospital had little experience in dealing with the rare disease, so Ashley took to the Internet and spoke to other families of children with Krabbe Disease to try and find a program with the expertise to treat Levi. She found the Program for the Study of Neurodevelopment in Rare Disorders in The Center for Rare Disease Therapy at UPMC Children's Hospital of Pittsburgh.
Doctors consulted with the family on Levi’s progressively worsening systems and recommended Levi be treated in Pittsburgh where experts have seen numerous cases of the rare disease. With the help of the International Services Team, Levi and his family made arrangements to travel to UPMC Children’s Hospital.
“Neil Smalley and the international team were extremely welcoming and helpful,” notes Ashley. “They made the difficult journey a lot easier.”
Once he was admitted to UPMC Children’s, Levi underwent a series of tests to determine the extent of the disease and to make recommendations for further treatment. Tests included an MRI, in depth hearing tests, cognitive visual eye tests, and nerve conduction tests. Physicians at UPMC Children’s confirmed the Krabbe Disease diagnosis and developed a treatment plan for his return to his home country.
After being ruled out as a candidate for a bone marrow transplant, physicians prescribed a combination of medications, physical and other therapies, and specific equipment designed to make Levi’s life easier and day-to-day care more comfortable.
Five days later, Levi returned home to Australia.
Despite the loss of mobility in his arms and legs and decreased head control, Levi is feeding well. His family is quick to note that Levi always provides an abundance of laughs, smiles, and kisses. Doctors predict his life expectancy at two years as the disease continues to affect his nervous system, which can lead to a loss of mental and motor function, deaf and blindness, and an inability to move or speak. Despite the odds, Levi’s family is optimistic about the treatment plan developed by the experts at UPMC Children’s.
“Levi seems to be holding his abilities very well and we try to keep him in amazing health,” says Ashley. This gives us hope that Levi will stay with us a little while longer.”
As a result of the care they received in Pittsburgh, Ashley and her family are reaching out to the staff at Princess Margaret Hospital to provide information and guidance to future families who may be affected by Krabbe Disease. They are also organizing a charity for families to receive financial help should they need to travel to UPMC Children’s for care.
“We cannot speak highly enough of the care we received at Children’s Hospital,” says Ashley. “With the information passed on and provided by Children’s Hospital, we now have direction and a care plan to make Levi’s days full of quality.”
At the Center for Rare Disease Therapy, every child diagnosed with a rare disease receives an individualized treatment plan and family-centered care.
For an appointment, consultation, or patient referral with an expert at UPMC Children’s for a child diagnosed with a rare disease, please contact: Phone: +1-412-692-RARE or 412-692-7273 Email: RareCare@chp.edu
Children's Hospital's main campus is located in the Lawrenceville neighborhood. Our main hospital address is:
UPMC Children’s Hospital of Pittsburgh One Children’s Hospital Way 4401 Penn Ave. Pittsburgh, PA 15224
In addition to the main hospital, Children's has many convenient locations in other neighborhoods throughout the greater Pittsburgh region.
With myCHP, you can request appointments, review test results, and more.
For questions about a hospital bill call:
To pay your bill online, please visit UPMC's online bill payment system.
Interested in giving to Children's Hospital? Support the hospital by making a donation online, joining our Heroes in Healing monthly donor program, or visiting our site to learn about the other ways you can give back.