Denver Teen, Family Helps Others Around the World With Rare Disease
DENVER (CBS4)- Monday is Rare Disease Awareness Day and CBS4 is highlighting a Denver teenager who has been living with a rare disease for almost five years. When 13-year-old Bella Damian-Ortiz was diagnosed with Neuromyelitis optica, she was only 9-years old.
"I thought that she just had the stomach flu," said Candice Galvan, Bella's mom. But after several tests, they found out the hard truth.
"The doctors came in and slowly wrote the words Neuromyelitis optica on the ICU window and said we basically had an hour to Google what it was," said Galvan.
What she found was heartbreaking.
Neuromyelitis optica, or NMO, is an autoimmune inflammatory disease that attacks the central nervous system. At the time, it had a 5-year survival rate.
"It was terrifying especially because at the time Bella didn't have the ability to swallow any longer and the lesions on her spinal cord were growing each day," Candice said.
"Along with being tired, I just get really sore sometimes for no reason," Bella said. "My body aches."
NMO is extremely rare. Only about 4-thousand people in the US have been diagnosed with NMO and it's even more rare among kids. Bella and her family felt alone so Candice turned to social media to find support and found NMO patients all around the world.
"It makes me feel less alone because not a whole bunch of people have it," Bella said. "So, like talking to the people who do have it and talking about my symptoms they're like 'Oh yeah I have that, too.'"
Candice now leads support groups to help other families on the same journey. She is the Colorado ambassador for the Sumaira Foundation, an organization dedicated to raise global awareness of NMO.
"I think the most important thing for her (Bella) is to be a carefree teenager and it has become my life's mission to raise awareness," Candice said. "She never complains, she is always so happy and always willing to help others."
Candice recently got Gov. Jared Polis to proclaim March as NMO Awareness Month in Colorado.
"It really just gave me chills," Candice said. "We're trying to raise our voice and our voice is being heard."
With more awareness, Bella and her mom hope one day there's a cure. But for now, Bella will continue treatment and looking forward to the future.
"I would definitely say it's not a restriction," Bella said. "It's something that you kind of have to live with and modify your life with."
Bella and her mom are going to Boston at the end of March to attend an NMO awareness gala where she will be the guest of honor. Her family has set up a crowdfunding account for help with expenses.
LINK: Sumaira Foundation
