As Jacob Moon turns 8 this weekend, he is embroiled in a bitter fight for his life, one that he will lose unless a miracle happens.
"It's just this knowing that things are going to happen, but having no idea when they're going to happen," mom Christine Moon said. "It's really scary."
Jacob has Sanfilippo syndrome, a rare terminal condition that limits the life expectancy of sufferers to their late teens. At present, his language and social skills are regressing.
Initially misdiagnosed with autism, genetic testing revealed the true cause of Jacob's behavior, and his changing physical appearance, in 2016.
"It was a relief to have an answer, but not the answer we wanted," Christine said.
There are fewer than 1,000 cases in the US, and children with Sanfilippo typically die in their teens because of the lack of an enzyme that breaks down waste in cells.
"Those substances build up in time," pediatrician Dr. Katherine Hough said. "And as they build up over time, because of the lack of this enzyme, damage is done to the different organs."
They kept the devastating diagnosis private at first, but this year, they have launched a fundraising campaign to increase awareness and raise money for research.
"Our philosophy is if we don't fundraise, there's no chance for any kid with Sanfilippo," Bill Moon said. "But if we do, at least there's something to fall back on when the time comes."
So far, they have raised tens of thousands of dollars through events and the sale of necklaces and wristbands. This month, they are hoping for an additional $20,000, thanks to a Facebook campaign called Jacob's Journey to raise awareness and money for research.
"Any family with a Sanfilippo knows that the clock is ticking," Bill Moon said. "And these clinical trials right now are the only doorway into any sort of treatment or cure."
And that, they are hoping, are the next steps in Jacob's journey.