Indianapolis — May is Cystic Fibrosis Awareness Month and cystic fibrosis is an inherited disorder that impacts the lungs.
Take a moment right now, plug your nose and imagine breathing through a straw. That’s what it feels like every breath for someone with Cystic Fibrosis.
Cystic Fibrosis impacts about 30,000 people in the United States — people like Ethan Roberts.
“I didn't even know if he would graduate,” Amanda Ford said.
Ford is Ethan Robert’s mother and said Ethan was diagnosed with cystic fibrosis in 2003.
Ford said when they got the diagnosis, she didn’t know what to do next.
“At that point, it was not a great future,” Ford said.
Roberts was just three months old when doctors confirmed the diagnosis.
“It was a new life after that,” Ford said, “It was almost just like a machine, treatments every three hours. Every three to four hours at that point it was around the clock.”
Fast forward 18 years and Roberts is graduating from Avon High School this month.
“The road to get here was very tasking and enduring,” Roberts said.
Cystic fibrosis is an invisible disorder, so while you can’t see it , Roberts has to do a lot to stay on top of his health.
“Every day starts with a 30-minute breathing treatment and different vitamins and supplements that I have to take with CF and then there’s the everyday activities that I have to do to keep me healthy and active, like going to gym, playing sports, going to park and stuff like that,” Roberts said.
Ford says they wouldn’t be where they are today if it wasn’t for the Cystic Fibrosis Foundation.
“There's no words for how grateful, none, for how grateful that I'm sure every parent and patient are to see just the support in general,” Ford said.
The Cystic Fibrosis Foundation raises money to help pay for research, research that’s found medicine like Trikafta, a drug that helps 90% of cystic fibrosis patients, like Roberts.
“It's just what I dreamed, it’s what I dreamed for it's what I prayed for and I mean I know it's 100% because of the CF foundation and their support and the money they put into the research,” Ford said.
Both Ethan and his mom are grateful for everything the Cystic Fibrosis Foundation has done and will continue to do for them.
So, here’s the call to action:
On June 5, you can help get involved with the fight to find a cure to Cystic Fibrosis.
The Indiana branch of the foundation has a lofty goal to raise $433,000.
Right now, they are just about halfway there, and the walk next weekend is their biggest event.
Kaitlin Roberts is the senior development Manager for the Indiana chapter and Ethan is her stepson.
She said you don’t have to know anyone with cystic fibrosis to have fun and get involved at this year’s walk.
“It is a fun day it's a celebration it's not it's not sad at all its we're celebrating all the wonderful fighters and their families and it's just it's a great day,” Kaitlin said.
The walk is at Victory Field on June 5 and registration is at 2:00 p.m. and the festivities start at 3:00 p.m.
There will be food, drinks and activities for the whole family.
You’ll also get a chance to see Victory Field in a new way.
Click here to register for the walk, join a team or make a donation.
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