Searching the world over: David's story
Last year, families from 32 countries came to Chicago seeking the hospital’s acclaimed pediatric expertise, which spans 70 specialty areas. Children’s Memorial is internationally renowned for the treatment of children with conditions such as brain tumors, spina bifida, epilepsy, heart arrhythmias, cancer, Kawasaki disease and more. It is also highly regarded for rare, lesser-known disorders affecting children.
Families who travel thousands of miles to Children’s Memorial are often desperate for answers and fear what may become of their child without proper diagnosis and care. In some cases, it takes just one consultation with a leading specialist to identify the child’s condition and prescribe life-changing treatment.
The story of David Phillipson of Bingham, Nottinghamshire in the United Kingdom is just one example of a young life transformed by Children’s Memorial’s world-class care and expertise.
When David was a toddler, his parents, Mike and Ann, noticed that he walked stiffly as if he
had severe arthritis. Soon, David was suffering one bone fracture after another. They visited specialists throughout their native England for a year and a half before an accurate diagnosis was finally rendered: osteogenesis imperfecta (OI), also known as “brittle bone disease.”
OI is a rare genetic disorder in which the body doesn’t produce enough collagen to protect
bones and joints, resulting in frequent and debilitating fractures. In its most severe form, children can break bones just by rolling over on their side.
By the time David was 5 years old, he had suffered more than 40 bone fractures in his lower body, and still his parents had no answers as to how to help him. Needing a reprieve, they took David, now in a wheelchair, to Florida for a family vacation. While walking down the street, Ann was handed a leaflet about a local hospital, which she tucked in her pocket — a decision that would change their lives.
Desperate for hope
Back in England, David’s condition was steadily worsening. “His legs were disintegrating, almost disappearing before our eyes, and the doctors didn’t know what to do,” says Mike. Ann suggested contacting the hospital in Florida from the leafl et she had kept. The letter they received from the Florida physician said he was sorry he couldn’t help, but knew of a man who could: Craig B. Langman, MD, at Children’s Memorial Hospital.
Dr. Langman heads the Division of Kidney Diseases at Children’s Memorial and is a professor of pediatrics at Northwestern University’s Feinberg School of Medicine. The family made the 4,155-mile trip to Children’s Memorial to see Dr. Langman, who provided the hope and reassurance they had long been seeking. “We had the utmost confidence that he could help us,” says Mike.
Although Dr. Langman’s primary area of expertise is nephrology (kidney diseases), he had also become highly knowledgeable about bone health since chronic kidney disease affects bones and growth in children.
A bone density scan revealed David’s dire condition. “He had one of the lowest bone densities that I’ve ever seen in an OI patient,” says Dr. Langman.
A novel treatment
Dr. Langman recommended a novel treatment for David, prescribing an oral medication (a type of bisphosphomate called alendronate), usually used to treat osteoporosis in adults. Because there are no therapeutic products approved for children with bone disorders, pediatric specialists are often forced to develop novel treatments to help their young patients.
Dr. Langman had already treated a handful of children using this tablet with positive results. His was the first practice in the U.S. and among the first in the world to treat a child with OI with an oral medication.
The results exceeded all expectations. Within a few years, David’s bone density more than doubled. “It was remarkable to see this child gain a whole new life,” says Dr. Langman. “David was able to get out of his wheelchair to some extent, to exercise and be active, and just enjoy regular childhood activities.”
The Phillipsons returned to Children’s Memorial annually for David’s follow-up care. “If it hadn’t been for Dr. Langman, I don’t know where David would be today,” says his father.
Serving up a champion
Despite the fact that most children with OI are not able to participate in competitive sports, David became an avid swimmer and basketball player before discovering his passion for tennis.
“David has never let OI hold him back from anything he wants to do,” says Mike. “He always takes the attitude that he is going to win.” And win he does. David, now 20, is a world ranked wheelchair tennis player who competed in the 2008 Paralympic Games in Beijing. He is currently competing internationally and training for the 2012 Paralympics in London.
David’s parents marvel at what he has accomplished so far. “I think back to when we were sitting at his bedside, sick with worry about what would happen to him, and now he’s traveling the world playing championship tennis,” says Mike. “Our son is having such a wonderful life.”
One-on-one with David Phillipson
Q: David, you are a competitive and accomplished athlete, what drives you?
A: The drive is my goal to be number one in the world and to win a medal at the 2012 Paralympics. Ultimately, I hope to earn a living from tennis and become a coach someday.
Q: How has your medical condition, osteogenesis imperfecta, impacted your life? What might people be surprised to learn?
A: Being in a wheelchair has deprived me from doing many of the things an able bodied person can do. However, it has opened many other doors for me through sports - traveling the world, meeting people from different cultures and understanding other languages.
Q: What do you think of Dr. Langman and your visits to Chicago?
A: Dr. Craig Langman is one of the nicest people I have ever met. He is the person that I credit with the increase in my bone density, which has enabled me to advance my life through sports. Meeting him and starting my medication was the best thing that ever happened to me. I will always remember my time in the wonderful city of Chicago and family vacations in Wisconsin after our visits with Dr. Langman, as a great time of my childhood. If it hadn’t been for him, my life would not be as rewarding as it is today.
This article first appeared in the Fall 2009 issue of Heroes magazine. For a dose of inspiration sent right to your inbox, sign up to receive our Heroes Update. Or read important facts about us.