Two rare conditions foster closeness among Henrietta preteen and parents
May 20, 2005
Matthew Alexander first came to Golisano Children’s Hospital at Strong when he was about two years old. That was in 1994. Since then, he has endured the pain and physical limitations of a condition called juvenile idiopathic arthritis (JIA), the equally rare “morphea” (localized scleroderma), and a serious bone infection called osteomyelitis.
There are different subtypes of JIA. It is sometimes a mild condition that causes only a few problems for children over time, but for others it can be very persistent and lead to serious complications. It may be characterized by joint inflammation, joint stiffness, joint damage and/or alteration, and changes in growth. The muscles and other soft tissue around the involved joints can become weak. Matthew’s arthritis symptoms are considered extraordinarily severe and persistent. He and his parents have made many adaptations to cope with its physical limitations.
Several years ago, Matthew developed a new medical problem of localized scleroderma which has proven to be profoundly disabling. While localized scleroderma generally involves a few areas of thickening, darkening, and tightening of skin, in Matthew’s case, the large amount of skin involved is more consistent with generalized scleroderma. Fortunately, however, none of his internal organs have been affected as they would be if it were the systemic form of the disease. He is one of five Miracle Kids who will be honored by the hospital during its Miracle Weekend celebration June 3-4.
“The miracle of Matthew Alexander is in the way he has grappled with his illness and developed into a very warm, sensitive, engaging, funny, reflective person,” said Dr. David Siegel who, along with Dr. John Baum, has been his pediatric rheumatologist since he first became ill. “He writes poetry that demonstrates insightfulness beyond his years. His inner strength sets him apart.”
Today, Matthew is a 12-year-old seventh grader at BurgerMiddle School in Henrietta. Despite arthritis that has been difficult to treat, a very aggressive progression of the scleroderma, and sleep apnea that sometimes makes it hard to stay awake, Matthew loves being in school. And it’s clear that his teachers and classmates love having him.
Last year, when Matthew developed osteomyelitis in one of his ankles as a complication of the scleroderma, he was hospitalized at Golisano Children’s Hospital at Strong for five weeks. Hundreds of cards and letters came from the school and dozens of them papered the walls of his hospital room. And it wasn’t long before he won over the hearts of the hospital staff.
“From the janitor to the surgeons, everyone at the hospital was fantastic during those five weeks,” said Jack Alexander, Matthew’s father. “We are so lucky to have them here.”
Jack and his wife, Karen, are all too aware of what it can mean to seek care far from home. Matthew’s first major surgery, to rebuild his hip, was performed at the Erie, PA Shriner’s Hospital. “That long trip really wore on us,” said Jack Alexander.
For the past few years, Matthew’s dad has devoted his days to his son’s care, working part-time at night as a machinist. Matthew’s mom works full-time in the health insurance industry.
“Among the things that impress me about Matthew is his closeness with his parents,” said Dr. Siegel. “In the early years of Matthew’s illness, they all made so many adjustments to his joint disease. Now the arthritis pales in comparison to the scleroderma. Both of these conditions are rare, and the severity of the illnesses is unusual. But the character Matthew has developed is equally rare.”
Miracle Weekend celebration
Miracle Weekend is always one of the most exciting times of the year for Golisano Children’s Hospital. It includes two major events.
The Golisano Children’s Hospital Telethon will be broadcast live from the hospital on 10NBC June 3 and June 4. In addition, Miracle Weekend always includes the Stroll for Strong Kids, to be held at Saturday, June 4, at GeneseeValleyPark. Children’s activities and registration will begin at When finished with their “Stroll,” walkers will be treated to a free lunch. There will be music by Gary the Happy Pirate, and many fun activities for the kids.
Participants are asked to raise money through sponsorship pledges from family members, friends and co-workers. Prizes will be awarded to the top fund-raisers. The event is expected to draw 2,000 and raise $200,000. Pre-registration is required by Thursday, May 26. To register for the Stroll for Strong Kids, or learn more about any Miracle Weekend event, call 585-273-5948 or visit www.gchas.org.
In addition to honoring children such as Matthew, Miracle Weekend allows the hospital to raise funds that provide needed equipment for the children it serves, and items that make their stay a little easier.
Money raised will be used by Golisano Children’s Hospital at Strong to buy equipment, such as preemie blood-pressure cuffs, and supplies, such as IV pole wagons, videos and games, and sleeper chairs so parents have a comfortable place to rest when they stay with their children.