DES MOINES, Iowa — March 21 is World Down Syndrome Day, but instead of celebrating it with friends and family, the Robinson family is enjoying it by themselves self-isolated at home due to the coronavirus.
“For us, it’s just taking every day day-by-day and doing everything we can to quarantine, stay inside, be with the kids and try not to bring anything in. Just try to keep it as normal as possible,” Tyler Robinson said.
Amber and Tyler Robinson are parents to Pierce, better known as Perfectly Pierce on Instagram. With over 38,000 followers, Pierce is a 3-year-old boy with Down syndrome from Des Moines.
“Growing up we didn’t know anyone with Down syndrome and didn’t really associate ourselves because we didn’t really know anyone. So when we got the diagnosis, we were in complete shock. We didn’t know what the future looked like for us,” Amber Robinson said.
Instead of living in denial, the Robinsons decided to take this head on and not only give Pierce the best life possible, but also be an advocate for the Down syndrome community.
“The reason we started his social media was because I know how important social media is, fortunately and unfortunately. So I thought, had I known someone on Instagram or followed someone on social media, who had a child with Down syndrome to see how good their lives really are, that would’ve been huge for me, especially when we first received his diagnosis,” Amber said.
With an infectious personality, the Robinsons say Pierce loves to make people laugh and enjoys hanging out with his friends at school, but that can’t happen right now due to COVID-19. Pierce is at high risk.
People with Down syndrome are more likely to get respiratory diseases due to smaller air passages and being more immunocompromised, not to mention their higher rate of pre-existing cardiovascular conditions.
“When it comes to RSV season and flu season, we are already more cautious because our children are so susceptible to getting those types of things,” Amber said. “So even in the winter we’re more cautious about using more hand sanitizer and avoiding the mall play area just because that’s top of mind. Now I don’t want to live in fear and I know we all don’t want to live in fear, but it’s scary. We don’t know what could happen if they get [COVID-19]. We just are taking it day-by-day and pray everyone can stay healthy.”
The Robinsons said they are working to raise awareness about how the coronavirus could be extremely dangerous to those with underlying health conditions or the elderly.
“I think sharing his Instagram and trying to get them to see that there is a bigger picture,” Tyler said. “I think it’s tough when you’re not affected by anyone, or don’t know anyone specifically that you see on a daily basis, but if we can kind of put Pierce in front of their eyes and be like ‘there is people that this can affect,’ that’s big for us.”