Because 80% of babies diagnosed with Spinal Muscular Atrophy die from it before they turn 2, those in the medical profession act "almost like they're waiting for her to die," Amy said. "I know that's a cruel thing to say, but she's not just a statistic. She's a person. She needs just as much of a full life as anybody else does."
The SMA community is a huge resource for me - strength, hope, support, and similar stories.
Lily's mom is right - this is exactly what happened during our June hospital stay. I have had to learn more about getting records and documentation to the providers. This is happening though and they are starting to review and have everything updated into his file at the hospital.