Los Lunas boy is now an ambassador
10-year-old will help raise awareness about people with Down syndrome
LOS LUNAS — Just call him “Mr. Ambassador.”
It’s a title 10-year-old Ean Anderson will be wearing proudly for the rest of 2019 after being named one of 33 ambassadors across the globe for Nothing Down, an international advocacy and support organization representing people with Down syndrome.
Ean and the other 32 ambassadors were chosen from more than 500 applications from 45 U.S. states and 15 other countries, and their appointments were announced in mid-February.
For the remainder of the year, he and his parents, Lynn and Jason Anderson, will participate in community outreach and social media promotions including awareness efforts, fundraisers, video projects and other events to support the organization’s mission of public education, eliminating the stigmas often associated with disabilities, and demonstrating the potential of people with Down syndrome.
The organization’s name derives from the concept “There’s Nothing Down about Down syndrome.”
“We don’t know why he was chosen,” said his mother, Lynn. “They didn’t explain that in the letter they sent in announcing it. We do know he’s the only ambassador from New Mexico,” and one of about 20 from the U.S.
Nothing Down is a 3-year-old nonprofit founded by two women who wanted to demonstrate the potential of people with the genetic disorder.
“Down syndrome is not a scary thing,” said Lynn. “People affected by it can do anything. They can go to school, some can even drive. More than anything, my wish is that people don’t treat those with Down syndrome, especially kids, any different than anyone else.”
Watching an animated movie, Ean was bouncing around the living room of the Anderson home like a typical 10-year-old. He was suffering from an allergy-related runny nose and sore throat that hurt so much at times it brought tears. But when the camera came out for photos, his mood brightened.
“He does runway modeling and he’s been in a few television commercials,” Lynn said. “He loves the attention.”
While Down syndrome — or trisomy 21 — is the most common genetic disorder to affect children, occurring in about one of every 1,000 births, Ean has a very rare version called mosaicism, so rare, his mother said, “We’ll probably never meet someone like him. He probably won’t either.”
Down syndrome arises when one of the 23 pairs of chromosomes each parent contributes to a child at conception — chromosome 21 — fails to split properly and creates a third partial or complete pair that is replicated in every one of the child’s cells.
This is the typical trisomy 21 characterized by physical growth delays, intellectual disabilities and the characteristic facial features common to most of those affected.
In mosaic Down syndrome, such as Ean’s, however, the affected child has the extra chromosome 21 in some cells but not all of them, which produces fewer Down symptoms.
“I hesitate to use the word normal,” Lynn said, “but the situation is that he does some things normally and others not. That gives him a little advantage, and I want him to be able to do everything.”
One place that “normal” shows is in how healthy Ean is, she said. Many Down syndrome kids experience a broad range of health problems that can shorten their life expectancy to 10-20 years, although modern medicine is expanding that. Being a very healthy mosaic, Ean could have a life expectancy of 50-60 years.
Lynn said she’d like to use Ean’s ambassadorship year to help correct misconceptions about the condition.
“We battle it everyday,” she said. “People want to put them in this little box and say they can’t do this and they can’t do that, then these kids prove them wrong everyday.”
To learn more about Nothing Down, go to Facebook.com/nothingdown or nothingdown.org.