ROCK PORT, Mo. (KMTV) — To pull back the curtain, this Positively the Heartland was not planned; however, once 3 News Now's Mary Nelson and Wade Lux met Anna Weber, it was clear there's a lot to learn from the Rock Port teen.
- Anna, now 14, was diagnosed with CLN3 Batten disease about five years ago. "One of the first things that has affected Anna has been her vision. Then, she has some short term memory loss. But it is a journey that shortens life expectancy. Currently, there is no treatment. There is no cure," Anna's mom, Libby, explained.
- Anna inspires with her energy and optimism. "She's been given a lot on her plate, but she faces it with so much positivity," Audrey Graves, one of Anna's teachers, shared.
- After our shoot, news came of progress with what would be the first-ever treatment for Anna's variant. To which Libby said, "There is hope."
Continue reading for the broadcast transcript of this story.
@ AUDREY GRAVES / ANNA'S BRAILLE TEACHER
@ LIBBY STENZEL / ANNA'S MOM
In one moment, she sounds like other teens, but Anna Weber is facing a unique and tall order: CLN3 Batten disease.
"One of the first things that has affected Anna has been her vision. Then, she has some short term memory loss. But it is a journey that shortens life expectancy. Currently, there is no treatment. There is no cure," Libby Stenzel, Anna's mom, explained.
That question of life expectancy is imprecise. For others, it's been late teens to early 20s. Because of vision loss, Anna studies braille with Audrey Graves.
"She's just pure joy. She has been dealt a lot in her life that a lot of people may just give up. I don't know how else to say it. She's been given a lot on her plate, but she faces it with so much positivity," Graves said.
And seemingly, Weber has no reservations. She competes in swimming.
"I do butterfly, breast and freestyle. But, if I do the IM (Individual Medley), I have to do backstroke, too," Weber shared.
She wants to start wrestling. She skis, and on a recent trip to California, Weber surfed for the first time.
At 14, she's figured out what it means to get busy living.
"I think if we can get administration and money figured out, the trajectory for Anna is a good trajectory. So every day, we look at Anna as who she is that day. As you know, she has goals! She has goals. And we're not squelching those goals," Stenzel smiled.
Weber's goals include a career in fashion or entertainment and living near the ocean - riding horses.
"I am a firm believer that Anna is here and she has been given this disease and there is something very special about her that she will eventually show the world," Stenzel added.
It's estimated that Batten disease affects three of every 100,000 people in the United States.