LENOIR, N.C. (WBTV) - *Editor’s note: This is about one of #MollysKids, children WBTV Anchor Molly Grantham follows closely on her Facebook page. It was first published there, which is why it’s written in a personal way. For years Molly has followed hundreds of kids with uphill medical battles. Find this story and updates on all #MollysKids here.
We’ve all lived a year in the last two weeks.
But, there’s also advice out there that as much as our entire worlds are being turned upside down (different work settings, teaching our kids from home, social distancing), we should also try to do “normal” things.
So that’s why I’m writing this morning about two new #MollysKids.
The coronavirus isn’t stopping cancer or genetic diseases or preemie births or heart disease in babies… so there’s no reason I should take a pause on introducing these amazing kids in our community.
With that said, meet Rylie and Mollie Bryant.
Sisters. They live in Lenoir. Both live with the same genetic disorder: Gaucher disease.
Gaucher disease is a lysosomal storage disorder that causes these little girls’ bodies to make too little of an enzyme needed to fight off common infections.
Bottom line, it affects many of their bodies organs and tissues.
It affects anyone living with it in various different, difficult ways. Interestingly, Rylie and Mollie’s younger brother, Noah, doesn’t have it.
Rylie was diagnosed at her two-year-old checkup.
A normal doctor’s appointment turned into an emergency when Rylie’s physician noticed her platelet levels were dangerously low—and had been dropping for more than six months.
She was taking iron supplements, but they weren’t working.
A week later Brenner’s Children’s Hospital helped discover Rylie’s spleen and liver were both enlarged. Doctors thought it was leukemia at first, but after another series of tests, this Gaucher diagnosis was confirmed.
“Waiting for the diagnosis was the longest, hardest three weeks,” Chelsie says. “And then we got it, and it was a word we’d never heard and we had no idea what it meant.”
Doctors explained more, including that Rylie had to start treatments immediately.
The good news?
After more than a year of transfusions every two weeks, this now 6-year-old is starting to show great improvements and have less anxiety about the taxing treatment process.
While this is comforting to hear, she’ll have to have these treatments until she’s 18 years old. At that time she can toward oral medicine.
Overall, it’s a life-long process.
“Once we knew that Gaucher disease is a genetic disorder,” Chelsie says, “their dad and I were tested to see if we carry the trait. We both do. That means there’s a 25 percent chance of each of our kids being diagnosed.”
Mollie was tested after her parents were confirmed carriers.
She was positive and also now receives treatments.
Being younger though, she just started them and is understandably more nervous about the process.
Like Rylie, she’ll receive infusions and treatments for the rest of her life.
It’s the Good, the Bad and the Always Real, right?
So here’s the last part of that sentence… according to their mom, this is the real:
“I didn’t expect two of my children to have a rare genetic disorder,” Chelsie said. “My youngest, Noah, doesn’t have it but does carry the gene. I just want people to be aware of all the rare diseases out there that can happen. Stuff like this, happens. Often. Here. Locally. It’s unexpected, but it happens. So many of our own doctors hadn’t heard of this disorder, but here we are, happening in their offices, right here in Lenoir.”
She paused in her email.
“I just want people to know. We’ll be living with this as a family now forever.”