Rochester Medical Center's Pearce said that despite parents' dedication to development of treatments, because so few children are affected by the disease recruiting scientists to research it is not easy.
"The families work incredibly hard [to bring attention to the disorder], but there are still only a few of us in the world working on the research," said Pearce.
"Unfortunately science is like any business – the more dollars we throw at it the more likely we'll be able to fix it," adds Pearce.
Competing with more well-known diseases such as AIDS and cancer for funding and attention is difficult.
But Pearce argues that researchers and doctors wary to get involved are overlooking the fact that breakthroughs for Batten disease will likely be used to understand other neurological disorders.
"Anything we discover for Batten disease will be applicable for many other diseases too," said Pearce.
"We don't understand how the brain works in its normal sense so while studying it in terms of Batten disease we may find something that might be applicable to Parkinson's or Alzheimer's – I'm sure of it."
While their parents continue to try to find funding for the gene therapy treatment, Nathan and P.J. sit together in their shared room and listen to DVDs.
The boys require around-the-clock care, said their mother, who has recently begun to worry that Nathan may not have much longer to live.
"Every day is getting harder," said Tricia Milto. "I do feel like with Nathan I'm playing tug of war right now. I feel like someone tugging him one way saying its almost time and I'm saying I'm not ready."
The Miltos have accepted that Nathan and P.J.'s conditions are too advanced to respond to any of the pending treatments, but say that the way the disease has affected their sons has changed the way they look at life.
They hope their hard work will one day result in a cure for the hundreds of other children suffering from Batten disease.
"I want no one to imagine what we're going through," said Phil Milto. "It was my dream to raise our kids and coach them in sports."
"Dreams change."
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