When COVID-19 hit and much of the world was forced to stay in place from spring 2020, many of us were left scared and uncertain about the future. But for parents with chronically ill children, they actually felt safer during the pandemic.
Speaking in a short, 30-second video posted to Moderna’s corporate Twitter account as well as its LinkedIn page, Honey Stecken, whose child Maren has the rare metabolic disease propionic acidemia, is one parent who had a very different view when the pandemic began.
“It’s interesting: I felt safer during COVID-19 than ever,” she says in the video. “That’s because people were practicing the precautions [such as mask wearing and keeping a distance] that my family has to take all the time.”
Maren’s condition is an inherited disorder in which the body is unable to process certain parts of proteins and fats properly and that can initially cause weakness, vomiting and low muscle tone. Without treatment, propionic acidemia can lead to seizures, brain damage, heart failure and increased risk of stroke.
Because of this, Honey has always ensured that the family protected Maren from respiratory and other infections as much as possible.
“I had hand sanitizer when there was none,” she says with a smile. “I had masks when there were none. So really for me, I felt like people joined our ranks for a little while. Feel the pandemic, because that’s a little bit what it’s like to live with a kid who is rare,” she concludes in a hard-hitting moment.
Honey was speaking as part of Moderna's new "Voice of the Patient" series that looks to illustrate what it's like to live with, or care for, patients with certain conditions and highlight the challenges they face on a daily basis.
Moderna, most famous for its mRNA COVID vaccine Spikevax, is now looking to broaden out into more diseases and is currently running a midstage trial for its pipeline asset mRNA-3927 in patients with propionic acidemia.
This new series also comes ahead of Rare Disease Day—which this year is Feb. 29—when many pharmas highlight the rare diseases that have few to no medical options and look to raise awareness about the conditions that they either market a drug for or are working on in trials.