Her 5-year-old has a rare disease. There's a cure, but she can't get it.
Catherine Illingworth, 39, knew something was wrong the moment her son's neurologist walked into the room.
Illingworth requested the referral from her son's pediatrician based on instinct. George took a while to start walking, she said. Once he started, he never seemed stable. At 4 years old, George fell often and couldn't keep up with friends his age.
His diagnosis was a gut punch: Charcot-Marie-Tooth disease type 4C, a rare genetic neuropathy associated with early-onset scoliosis. As the condition progresses, George could develop other symptoms like cataracts, deafness, bone or joint abnormalities, cognitive issues and respiratory problems.
The doctor offered a ray of hope and told Illingworth that a treatment for her son's rare disease had likely already been invented. The catch? It was stuck in "the research valley of death." Illingworth found the neurologist's prediction was true. Her son's treatment was just a few clinical trials − and $6 million − out of reach.
https://www.usatoday.com/story/money/2025/08/26/her-son-has-a-rare-disease-his-treatment-is-6-million-out-of-reach/85711618007/
Of course---not in this shithole county with its crappy healthcare