Focusing on Function
The first time Tiffany Jasper heard the word “achondroplasia,” it was just another gust of medical jargon that blew right past her. Then the diagnosis was confirmed and a doctor spelled it out. Her infant son, Nathan, was a dwarf.
“I had no idea,” recalls Jasper. “It took my breath away.”
Nathan is now 6 and the Jasper family – Tiffany, Jess and their three daughters – long ago adjusted to having a little person, who will never be more than about 4 feet tall, in the house. Their biggest adjustment: stop making adjustments.
“Nathan knows he’s not going to get special treatment from his dad and me,” says Jasper. “However, we have had to remind the grandmas and grandpas that he needs to do things independently.”
When the Jaspers built a new home in Olympia, Washington, three years ago, the only accommodation they made for Nathan was to shave one inch from the height of all the stairs and to keep stools in every room. “He has to live in the real world,” explains his mom. “When Nathan starts first grade next year, they won’t have anything especially for him. He needs to learn how to do everything for himself.”
Diversity, Not Disease
As far as Dr. Michael Goldberg is concerned, there’s no reason Nathan shouldn’t do everything for himself. While dwarfism is associated with complications ranging from scoliosis to hearing and vision loss to sleep apnea, it need not prevent a child from living a full and rewarding life, says Goldberg, leader of Seattle Children’s Bone Dysplasia Program.
“Society has tended to look at dwarfism as a disease, when it should be viewed as an example of diversity,” says Goldberg. “We will address whatever medical problems come up, but these are not children who are broken and need to be cured. They have the same needs and capacities as every other child. They just happen to be short.”
Goldberg and Seattle Children’s team are committed to addressing the functional challenges of children whose short stature and limbs can make daily life difficult.
“We’re interested in whether these kids can dress themselves, use the playground equipment and toilet independently,” says Goldberg. “I’m a big believer in medical care that improves performance, not necessarily making a condition go away.”