A lucky 6-year-old from Hampton has been selected as the ambassador for an international Down syndrome awareness organization.
A few months ago, Debra Vance submitted her son, Ethan Vance, as an applicant for Nothing Down’s ambassador program.
Nothing Down is an international organization that promotes awareness of individuals with Down syndrome. Debra said she didn’t expect Ethan would be picked but she hoped the program would think her son was just as awesome as she does.
Debra was pleasantly surprised last month to know her son had been chosen as one of 29 new ambassadors selected from all over the world.
“It’s really just an answer to a prayer,” she said. “When he was born, I wanted to show him off like Mufasa and Simba on Pride Rock, that’s the pride I have for him.”
Ethan is described as a “miracle” by Debra because from the start of her pregnancy, he had to fight to survive. At 43 years old, Debra was considered a high risk pregnancy and knew Ethan would have Down syndrome before he was born.
Ethan came into her life ready to change the world, she said.
But he had to struggle and fight for every breath after being born with two holes in his heart and fluid in his chest.
Ethan spent the first month of his life on a ventilator and struggled to eat. He eventually underwent open heart surgery and after recovering, was taken home with his family where he had to eat from a feeding tube.
Debra said doctors told her Ethan would always have to eat from a feeding tube but she didn’t want a life of struggle for her son. So she did research, argued with doctors and enrolled Ethan with an early intervention therapist who worked with him for two years until he was able to eat on his own.
“During that time, he became Super Ethan,” Debra said. “He was given such a bleak outlook in the hospital but by the grace of God, Ethan just seemed to soar over every obstacle that was placed in front of him.”
As Ethan continued to grow and become stronger, Debra said she wanted to connect with other parents of Down syndrome children and learn new resources. She said she noticed there weren’t very many African American families she could connect with.
“When he was born, I was trying to find others that looked like me who had conquered this but it was hard,” she said.
Then she found another African American mother at one activity for children with Down syndrome. She said their eyes met across the room and they were both surprised to finally see someone that looked like them.
Debra has been able to connect with other social media groups for parents of color with children who have Down syndrome but she said she has noticed there doesn’t seem to be a lot of recognition of African Americans with Down syndrome. (Story continues below photo)
And that’s something she hopes Ethan can help change.
“I would like for Ethan to be an inspiration for all families, especially families of color,” Debra said. “I want people to see their little one or someone in their community who has special needs and look at them as an inspiration.”
Debra has been using social media to spread Ethan’s story through the “En‘JOY’ing Ethan” Facebook page. As a proud mom, she regularly posts photos of Ethan opening gifts, spending time with family and simply living a happy life.
Debra said the idea for the page came from her mother-in-law, who would always encourage her family to enjoy every day they had together.
“You just have to choose joy in all things that happen,” she said.
Ethan, who is now a student at Smith Elementary School, will have the chance to continue spreading his message of joy as an ambassador for Nothing Down.
The organization will post about Ethan and his achievements on social media in addition to encouraging him to participate in community outreach and advocate for the Down syndrome community, said Shannon Daughtry, co-founder of the organization.
“I’m excited to show the world my amazing little boy who I have such high hopes for and will do amazing things in the world,” Debra said.