A disease that affects one in a million makes the second boy in Australia unable to move

Pantothenate kinase-associated neurodegeneration is a rare disease characterized by a progressive degeneration of the nervous system (neurodegenerative disorder) and buildup of iron in the brain.

Miller O'Flynn Source: Sophie Cashen (Facebook page)

Source: Sophie Cashen (Facebook page)

Here is what Miller's Mum, Sophie Cashen,  had to say to describe this photo published on her Facebook 17 October 2018.

 

"Millers worse then when we were home."

He’s in constant, severe pain. Unable to breathe without help, Biting down on his tongue and causing lesions on his tongue. He’s now vomiting blood, the dystonia is possibly tearing his throat. He has a very low respiratory rate right now, his readings last night were between 4 and 6 breaths per minute. Investigations are under way with respiratory. 

Nothing except chloral hydrate works. and it only works if we give enough to put him to sleep. He’s only breathing well and without much pain when he’s asleep. 

He’s had two doses of thc so far, such a small dose we will need to work it up for a while before we know what it will do. 

Could be many weeks. We’re going to try a larger dose of clonodine as a rescue medicine, and have chloral as the secondary rescue. See if it offers any relief without putting him to sleep. End of life tones and discussions are happening a little bit.

Bit confronting but hey one step at a time and we have a few things we can still try. We’ll be home soon enough, all of us. But for now we’ll just do the best we can to get through this stage of our journey. 

He’s being really strong and so brave even though I can tell he’s scared sometimes. He’s my hero.