Delaware third grader Kahlani Wolpert is painting and making music while she receives long-term treatment for skeletal dysplasia. She took her first steps this summer. She was born with the condition, has amelia of both upper extremities, and does not have both arms or full-length legs. She uses her feet to do everything.
In a CBS Philadelphia story published Wednesday, the story follows a child more interested in painting than basketball, and a family that has turned frequent hospital trips into something that feels familiar.
One Step, Then the Next
Wolpert is an artist who paints and a musician. She told CBS she works one step at a time and does not want to rush. Her advice was blunt: "Trust the process, guys!"
The reporting describes a third grader who strives and does not let the condition hold her back. The preference is specific. Basketball is not the interest. Painting is.
Those first steps sit inside the same account as the art, without a public timetable attached to either. What she has put on the record is the pace: one step, and no rush.
A Small Map of Specialist Care
The long-term treatment is at Nemours Children's Hospital. Nemours says its skeletal dysplasia program sees people from birth up to age 35, and that only about a half-dozen clinics in the country treat children with skeletal dysplasia.
That scarcity is the practical geography around a Delaware hospital stay. Families are not choosing among a clinic on every corner. A program built to follow patients from infancy into adulthood is also a long commitment, which matches the kind of care CBS reported for Wolpert without fixing how long her own course will run.
Children's Hospital of Philadelphia recommends that children born with or later diagnosed with a skeletal dysplasia be treated by a multidisciplinary team of experts. CHOP says the outlook varies, and that many of these children can live relatively normal lives.
A House Across the Street
Wolpert and Luz Santiago, her grandmother, whom she calls "mom," frequently stay at the Ronald McDonald House of Delaware, across the street from the hospital. Wolpert told CBS, "I'm home; it feels like I'm home." Santiago said the house feels like a second home.
Nemours places that Ronald McDonald House just across the street from the grounds of Nemours Children's Hospital, Delaware. The house has 50 private bedrooms and bathrooms, and shuttle transportation is available between the house and the hospital.
For a child in long-term specialty care, the shuttle and the private room are not scenery. They are how a stay across the street becomes repeatable. Wolpert's "I'm home" and Santiago's "second home" describe the same arrangement from two sides of it.
Rare, and Counted Differently
CHOP says skeletal dysplasias collectively affect about one in every 4,000 to 5,000 births. The conditions are individually uncommon. Together, they are a regular part of pediatric specialty medicine.
The catalogs do not agree on a single total. Nemours describes about 500 types. CHOP says more than 450 distinct skeletal disorders have been described. KidsHealth says there are over 700 different forms of skeletal dysplasia caused by genetic changes. A medical review also puts the number described above 700 and gives a collective prevalence of 1 in 4,000.
KidsHealth lists music, art, computers, writing, and photography among activities a child with dwarfism can explore. Wolpert is already painting and making music, on the schedule she set for anyone tempted to hurry her.
