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 beauty and 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 non-profit 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.”
Photo courtesy of Lynn Anderson
Watching an animated movie and 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 and he knew just what to do.
“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, named for British physician James Landon Down, who first fully described it in 1866, 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. We’ve battled it with doctors.
“I’m still resentful about the way the hospital where he was born treated us. They were awful to us. Right after he was born, they came and told us he’d never become anything and they tried to get us to give him up for adoption.”
Now, she said, “He’s my normal. I would do it over and over and over again to get the same kiddo.”
School was another experience that wasn’t always positive.
“We send him to Los Lunas Elementary School because they’re just extremely supportive there, “said Lynn. “That’s not necessarily true of all schools.”
And because the school is supportive, “He has tons of friends who protect him.”
Ean agrees that he has a lot of friends and his favorite classes are art and P.E.
Lynn said the school will participate March 21 in a World Down Syndrome Day event in which “everyone wears crazy socks to school that day.”
March 21 is the international observance day because Down syndrome comes from the genetic abnormality of the third pair on the 21st chromosome — or 3/21.
Many people believe Down syndrome is a result of a parental genetic flaw or can be passed down genetically. Nothing could be further from the truth. It occurs entirely by chance with absolutely no regard for who the parents are.
“Parents might be tempted to blame themselves,” Lynn said. “They shouldn’t. It’s just what happens. Like I keep saying, he’s my normal.”
To learn more about Nothing Down, go to Facebook.com/nothingdown or nothingdown.org.