![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
Four days ago, I read the Kirkus review of Lara Avery's The Memory Book after seeing it linked on the Kirkus Best YA of 2016 list. I promptly placed a library hold.
One day ago, my hold came in at the library and I read this novel from the point of view of a teenager diagnosed with Neimann-Pick type C, a rare lysosomal storage disease which causes physical and cognitive degenerative symptoms.
Two years and two days ago, my sister died of Late Onset Tay-Sachs disease, a rare, adolescent-onset lysosomal storage disease which causes physical and cognitive degenerative symptoms.
So. That happened.
( Some spoilers behind cut, warned for. )
In conclusion: Fuck Tay-Sachs. And Neimann-Pick, and Gaucher, and this whole shitty family, and all the rest of the rare diseases.
One day ago, my hold came in at the library and I read this novel from the point of view of a teenager diagnosed with Neimann-Pick type C, a rare lysosomal storage disease which causes physical and cognitive degenerative symptoms.
Two years and two days ago, my sister died of Late Onset Tay-Sachs disease, a rare, adolescent-onset lysosomal storage disease which causes physical and cognitive degenerative symptoms.
So. That happened.
( Some spoilers behind cut, warned for. )
In conclusion: Fuck Tay-Sachs. And Neimann-Pick, and Gaucher, and this whole shitty family, and all the rest of the rare diseases.
