On March 28, 2018, I sat down with Baby Jane and her parents Megan and Bryant of Bemidji, Minnesota, USA. They shared Jane’s and their journey–first devastation from the news of Jane’s deadly disease (spinal muscular atrophy) but then the hope of a brand new drug called Spinraza.
Instead of certain death by the time she is a toddler, Jane now shows promise of a healthy childhood. They know they’re lucky. They’ve had an insurance plan to cover the cost. Families in most other countries have no access to this drug. And every family in this situation, until very recently when the drug was first prescribed, has had no choice but to watch their small child perish.
It’s a story of struggle, scientific breakthrough, the price of life, and the hope to save one’s child.