PARKER, Colo. – In 2012, KUSA-TV met now-11-year-old Nathan Hiltman's family after his mother – Stacey - started a social-media campaign. She asked people to send Nathan greeting cards from all over the world so he could see as much as possible before his degenerative disease completely took his eyesight.
See all the cards Nathan received here: http://bit.ly/1NPuiLH.
At that time, the family was searching for an answer as to why Nathan was losing his sight.
Three years later, they found out why. But now, they wish they didn't know.
"I would've been happy with him being blind," Stacey said. "I could've handled that, and we thought that was the end of the world. Little did I know, at least if he was blind, he'd still be here."
Nathan was diagnosed with Batten Disease, a rare degenerative neurological disorder that affects one in 100,000. It will eventually take Nathan's life.
What is Batten Disease? - http://1.usa.gov/1LA7RbC
"I don't know the reason for this," Stacey said. "I don't know. I hate it. I hate what it's done to him because I'm losing him inch-by-inch. I want my little boy back. He's not the same little boy."
Dr. Pete Baker is a pediatric genetic specialist and Nathan's doctor at Children's Hospital Colorado.
"For the patient, it starts out with vision loss and progresses to motor dysfunctions, not being able to move appropriately, speech dysfunction, not being able to talk appropriately and ultimately a shortened life span," Dr. Baker said. "Over the course of decades though."
Children are typically diagnosed between 5 and 10 years old. Clinical treatments are pending, but currently, there is no cure for Batten disease.
"It's frustrating - as a physician dealing with a rare disease - to not have an answer and not to be able to give the family that hope," Dr. Baker said.
The Batten Disease Support and Research Association - http://bdsra.org/what-is-batten-disease/
Diagnosing a child can be challenging as well.
"We go down the list of things that might be treatable," Dr. Baker said. "We start to hunt for genes and that process can take a long, long time. The initial testing that we did, including some screening for this disorder, came back negative [for Nathan]. Turns out that screening test isn't very good for kids that are Nathan's age with his lack of symptoms. He wasn't having neurologic symptoms. He wasn't having seizures. This test is not great for screening for that at that young age. All those tests came back negative. So, we moved on to genetic testing."
Stacey wishes she could protect Nathan from his diagnosis.
"It's just like this clock that's just ticking," Stacey said. "It just get louder and louder and louder."
Stacey's blog - http://sothathecansee.com/
All Stacey can do is talk about it, educate herself and others.
"I want to save my son," Stacey said. "I just want this word to get out there so that people know what this disease is so they can understand it."
If you'd like to help raise money for Nathan's family, visit his GoFundMe page: www.gofundme.com/nathanfightsbatten.
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