Miller Cashen is only six years old, but he won’t be able to walk, talk, or eat for the rest of his life.
It happened out of the blue. One day he was his usual “cheeky” self.
Ten days later, he’d gone from being “his normal self to not being able to do these things,” his mother, Sophie, recalled.
When Sophie took her son to the hospital, he was diagnosed with pantothenate kinase-associated neurodegeneration (PKAN), a neurodegenerative condition that causes muscle movement to deteriorate over time.
For Miller, his doctors suspect that this condition was caused by iron deposits that built up in the boy’s brain – and that it will take his life far sooner than expected.
But aside from these vague speculations, there isn’t much Miller or his family can do.
“We don't really know enough to tell how the regression will happen,” she said. “It’s basically day by day. We don’t know his life expectancy or anything.”
Each day, Sophie takes care of all of Miller’s basic needs: feeding him through a tube in his stomach, bathing him, administering his medication, and everything else in between.
It’s terrifying for Sophie to watch her son deteriorate in such a way, but she takes comfort from the fact that Miller still makes a point of smiling brightly at her whenever he’s happy and comfortable.
“It’s strange how you don’t need words to communicate. With his eyes he says so much,” Sophie noticed.
At present, Sophie tries to do as many fun things for Miller as she can, like take him to the zoo to see all the animals, or even let him go to school to see his friends.
“He is the strongest person I’ve ever met. Not once has he complained,” she said. “He never cried about it. He just wakes up and deals with it. That’s what keeps me going - knowing that he is happy.”
Sophie is currently trying to share Miller’s story as much as possible to raise awareness of the rare disease, PKAN, in hopes that someday a cure may be discovered.
You can visit their Facebook page here.
