My sister needed the right wheelchair to survive. Insurance refused it till the end

My sister had a condition called “aromatic L-amino acid decarboxylase deficiency”.

Mouthful, right? It’s also exceedingly rare: something like seven other children had been diagnosed with it back when she finally got the diagnosis at age 12. The condition is so unusual that no pharmaceutical company would ever invest in studying it.

It’s a pediatric neurotransmitter disorder, but from when she was born until her death at age 17, it was easier to just say she had cerebral palsy – a blanket diagnosis given for many neurological disabilities caused by damage to the brain around the time of birth.

Cerebral palsy can look like anything, from a bum hand to full paralysis. My sister was unable to walk or talk, was incontinent, and could not hold her own body up, even her head – a perpetual infant.

We always knew she was not long for this life. Doctors had told my parents she would not live past seven. But I guess the power of an Arab mom’s love and resilience gave her 10 extra years.

https://www.theguardian.com/us-news/2024/dec/13/health-insurance-wheelchair-delay

Read the whole thing. So, so cruel. But that's the bean counters for you, and that's all the healthcare insurers are about, isn't it?