FLINT (KYTX) - A 9-year-old East Texas girl is heading the fight against cystic fibrosis.
Maci Drewry was diagnosed with the disease when she was three, and now at nine, she refuses to stop fighting until there's a cure.
Cystic fibrosis is an incurable disease that causes debilitating lung infection. Just six months ago, a ground breaking cystic fibrosis medication was approved by the FDA. It's called Kalydeco. It will only be able to help about four percent of cystic fibrosis patients, but Maci and her family say it's one step closer to a cure.
Maci is a very active 9-year-old.
"I like to Wakeboard, I like to cheer, dance, and make videos, and raise money for CF," she says.
The smile on her face and constant energy might hide the fact that she has an incurable disease.
"Living with CF is hard for Maci," says her mother Christa Drewry.
Christa says Maci wouldn't be able to do any of her favorite activities without her medications.
"She wakes up in the morning and does 30 minutes of her vest treatments, the airway clearance and she takes about 35-40 pills a day," Christa says.
Her cystic fibrosis medications give her energy to get up every day, and keep fighting for a cure to her disease. She's made bracelets and T-shirts for cystic fibrosis events.
"Just this year alone we've raised $55,000 towards the walk," Christa says.
Her YouTube videos about cystic fibrosis have gone viral internationally, and she has more Twitter followers than some celebrities!
"12,000!" Maci says with a smile.
"It just gives us the drive to keep going and want to do more," Christa says.
Cystic fibrosis research is not governmentally funded, which is why Christa says it's up to them to raise money for a cure.
"It's so important to get donations from our friends and families and companies and to get everyone involved with CF because without them we wouldn't have what we do now. We wouldn't have Kalydeco. We wouldn't have the new drugs coming out so we have to keep going," Christa says.
She says what keeps her going is her daughters incredible attitude.
"She's been in the hospital a lot so its been hard for her," Christa says, "but she keeps going with a smile on her face always."
If there's one thing the community has learned from Maci, it's to never give up.
"There's a lot of hope and we feel like it's right around the corner," Christa says.
All the money raised in local CF events goes towards research, and helping find a cure.
The annual Cystic Fibrosis Gala was just held here in Tyler in April. The Cystic Fibrosis Foundation walk is coming up in September.
For more information on the local cystic fibrosis chapter, visit the web site: http://www.cff.org/Chapters/tyler/
