For a young woman whose odds of surviving childhood were slim, Annabelle Green is doing quite well, her mother Jennifer told me recently. Annabelle walks, communicates, enjoys visiting the local hot springs, having books read to her at the library, and exploring Idaho.
And skiing, says Jennifer, “She’s all about it.”
But how long Annabelle will live is an open question. “I’m always worried about her survival on a daily basis,” Jennifer said.
I first wrote about Annabelle more than two decades ago. At the time, Annabelle was a toddler with a rare and highly fatal genetic disorder called Sanfilippo Syndrome. As the disease progressed and Annabelle accrued brain damage, Jennifer and her mother, Christine Barrietua, raced to reverse the state’s denial of an experimental stem cell procedure.
The state Department of Health and Welfare objected to Medicaid having to pay as much as $1 million for the treatment even if it might have been th…
