COLORADO SPRINGS — A story of bravery and resiliency during the COVID-19 pandemic is being shared by a local teen. The past half year has presented many challenges for many, but especially for her because she has a compromised immune system.
Macy Helm, 14, was diagnosed with a rare kidney disease at the young age of 3. During the pandemic, she and her family have had to take extra precautions to ensure Macy's safety, like isolating, washing groceries, and working from home.
"Right now, a lot of kids can go to their friends house and hangout but I try to stay home as much as possible to limit the germs going in and out of the house," said Macy. "I probably look like a normal 14-year-old on the outside, but a lot of the time I don't feel so great and I still have to go on with my day."
Helm's day is far different than most her age though. She has a rare kidney disease called focal segmental glomerulosclerosis, or FSGS.
"I spend time driving back and forth to doctor's appointments and in the hospital. So there's definitely that aspect where most kids would be playing outside, and I'm in the car driving to Denver."
She often makes the trip to the big city to seek treatment for her disease. Her most recent hospital stay was in 2020. She wasn't diagnosed with the virus, but her mother, Kelly Helm, says the family's concern is that COVID negatively affects people's kidney's and people who have had a kidney transplant, like Macy.
"We didn't know if Macy were to catch COVID, how that would affect her. And we knew she would be hospitalized regardless, but for a while there it was really scary," said Helm.
"For me, it's a little different because I could end up in the hospital for a couple weeks and I won't be able to recovery as quickly. It'll take me more time," said Macy.
Helm mentioned the family has isolated more than most, and while many people have changed their routine during the pandemic, Macy's has remained very much the same. She's used to wearing face coverings, being extra careful and not traveling during flu or cold season.
"She's been training for this moment her whole life, because this is not necessarily anything new for her," said Helm.
"This is something that I'm dealing with everyday," said Macy, "but that's just life."
Through it all however, Macy's mom says she's stayed strong during her battle.
"She has always been resilient and continues to live life to the fullest, and not let kidney disease or having a compromised immune system stop her from enjoying life."
Although her disease makes her tired some days, it hasn't stopped Macy from doing one of the things she enjoys most, to dance.
"I love to dance and do theater," said Macy. "I've been doing it since I was about six or seven."
Macy remains a fighter and has undergone more than 35 procedures since her diagnoses as a toddler.
An estimated 60 people in the state of Colorado have been diagnosed with FSGS.
The Helm family are also advocates for NephCure Kidney International, an organization committed to supporting research for FSGS and Nephrotic Syndrome.
Because of the pandemic however, many fund raising events in 2020 have been postponed, canceled or moved online. For more information about the organization, clickhere.
