“First Dying Wish” is an independent documentary film about the genetic disease spinal muscular atrophy (SMA), which is the most common genetic cause of infant death. Babies who have it are usually born perfectly healthy, and then symptoms usually start appearing at 2-4 months old. The children start to lose the ability to use any of their muscles, and are soon unable to breathe, eat, swallow, cry, etc. Upon diagnosis, parents have two drastically different choices they can make regarding the fate of their young child – palliative care or aggressive care. You either have to let them go. Or hang on to them as long as you can using artificial means and technology to keep them alive. What would you decide?

The film centers around Paula Lavigne, an award-winning investigative journalist from Nebraska, whose first-born child, a son named Wyatt, was diagnosed with SMA in the early fall of 2010. Lavigne and her husband were suddenly forced to make a heartbreaking and impossible decision regarding their son’s care and future. It’s a devastating example of modern medicine colliding with ethical questions about what ‘quality of life’ means, and the very essence of life itself. Parents are being forced to decide when their children will die, and what type of life they will have. Medical technology has advanced so that parents can now choose to keep their kids alive with various machines to breathe and eat, but they are unable to use their bodies and must lay nearly flat at all times so fluid doesn’t build up in their lungs. Cognitively, they are perfectly fine, in fact, most are even advanced, so they are essentially trapped in their body, growing older as children do, but knowing that they most likely won’t ever talk, walk, play, laugh, etc.

Lavigne and her husband took the route they felt was most ethical and appropriate for their family – they chose to let their son go. Losing their five-month old first born son has been devastating, but on top of that pain, they have had to deal with the lingering question: Did we make the right choice? The documentary will include ample footage of Lavigne, her husband and Wyatt shot before he passed away at five months old. And we will follow Lavigne as she spends time with three other families and children with SMA, talking to the parents about their choice and why their decision was best for them.

It’s reached the point now, where some kids are coherent enough to actually recognize the quality of life that’s in store for them, and a few have actually told their parents they don’t want to live, so they’ve asked they people who gave them life, to unplug the machines. We plan to spend time with a child who has decided to unplug their machines, as well as a family who’s infant has recently been diagnosed with SMA and they must decide what route to take.

Essentially, it’s a film about the two choices a parent can make, the ethics behind that choice, and how that decision affects both the life of the child and their parents – as well as our larger society (which is often forced to pick up some of the medical bills and care of these children who need extensive care). More personally though, the film is about Lavigne’s quest to come to terms with the choice she made to let her son go.