Hello Josie:

Thank you very much for your e-mail. I appreciate your concerns. This child had Type 1 Acute Infantile Spinal Muscular Atrophy which I am sure you know is  different than Type 2, 3 and 4. Type 4 is consistent with a normal life  expectancy. According to the experts, Type 1 is associated with the highest  level of infant mortality. 95% of babies born with Type 1 Acute Infantile  Spinal Muscular Atropy do not survive past 18 months.

This story was meant to focus on Type 1 SMA and the decision this young couple  made about their child. I am sorry if there was confusion to you about that.

 We have done many terrific stories on people living with various disabilities and I am sure we will do more in the future. Thanks again for your e-mail and  your interest in News 8.

Cordially,

Susan Shapiro



Hi Susan,

Yes, you and WGAL regularly do great stories that focus on adults with disabilities leading active, productive lives, and it's very much appreciated.

Thank you for the clarification. My understanding, though, is that much of the high mortality rate for Type 1 has to do with parents choosing to withhold such assistive technology as feeding tubes and ventilators, and that there isn't a "hard and fast" rule about which type a child falls into. One common experience I hear from people who grew up with severe disabilities over the years is that they weren't expected to live to the age of 2, then 5, then 10, then into adulthood, and so on. Again, commentary from an adult living with the disability, or a similar disability, would have added balance, since it is a disability issue that was being commented on solely by nondisabled people.

To most nondisabled people, the idea of depending on technology to eat and breathe is terrifying. But to many people with severe disabilities, these types of technology are experienced as freeing, life-giving. Again, an interview with an active adult with SMA or similar disability, perhaps especially one who uses a ventilator in everyday life and utilizes personal assistance, would have given a more balanced view.

Thank you for your time and response,

Josie

Dear WGAL, All you did was take a horrible choie and give it an emotional, psuedo-scientific (namely BS) reasoning, to excuse the horrid decision making of these parents. I find myself asking you why you didn't call other parents of kids with SMA, or even, god forbid, call the MDA for soe realistic data. Yes, it is hard to raise a child with a disability, yes it was difficult to see my best friend dying when I was in high school, but I still to this day, 14.5 yrs after his death thankk god his folks raised him with the same expectations, slightly modified, as any other kid. It smacks of poor research, and honestly, really shoddy journalism. My personal hero, a woman named Diane, who has SMA has been an incredibly important force in my life is living with SMA, It really is as Josie has stated a REAL serious biased viewpoint in your news room to take this perspective. Sincerely Mike Reynolds Lewiston, Maine