This meme is part of a collective response to a tragic murder of 3 young children with Spinal Muscular Atrophy (SMA). It is suspected that they were suffocated by their own mother. Many are referring to this horrible act as “euthanasia” and a group of us adults with SMA thought that starting an online campaign to share our success stories may prevent something like this from happening again. #SMAachievers
SMA is not a death sentence. Though babies diagnosed with SMA Type I (the most severe type) are generally given a bleak life expectancy, this doesn’t mean they can’t lead fulfilling lives. I know plenty of Type I adults who are living into their 30s, 40s, and even 50s after being told by doctors that they wouldn’t reach adulthood.
SMA does not cause suffering. Feeling sorry for children and adults with SMA is unnecessary. Spinal Muscular Atrophy effects motor neuron production, causing voluntary muscle loss. Affects caused can include weakened leg and arm muscles, difficulty swallowing and breathing, and decreased head/neck control. I was diagnosed at 14 months of age. I never walked, crawled, or even reached far to grab things. I’ve been like this my whole life and do not know any different. Kids with SMA tend to adapt to their physical inabilities and are known to be bright, positive and social.
Though we are weak in a physical sense, it does not mean that we cannot be ambitious, independent, productive members of society. With current medical advancements, individuals with SMA have increased length and quality of life. Our weakened breathing muscles can be supported with noninvasive ventilation such as Bi-PAP (what I use at night to breathe for me while I sleep) and more invasive ventilation techniques like a tracheostomy + vent. Nutritional needs can be supplemented by tube feedings via G-tube if chewing and swallowing become difficult. Cough Assist machines help “hack up the crap” when experiencing respiratory illness. Power wheelchairs with amazingly sensitive joysticks and/or other adaptive technologies allow mobility with the slightest of movements.
To think that these three children’s lives were cut short, for no other reason than inconvenience and ignorance, is heartbreaking. Although I do not know the exact circumstances of the situation, the motives of the mother seem clear. This family is wealthy, so there weren’t any overwhelming medical expenses. Hell, they could have paid for home care to handle any inconvenience these children could have possibly cause.
The neighbors even commented on how happy the children were. They didn’t appear to be sickly or suffering. Also, the parents weren’t aware of their genetic predisposition to SMA until the first child was diagnosed. At the time, the mother was also pregnant with twins, who were diagnosed shortly after. They do have one healthy child, who’s life was presumably spared because she is able-bodied.
I can see how three small children, newly diagnosed with a physical disability could overwhelm parents. But there were PLENTY of other viable options without “euthanizing” them. Even using that word for a child is sickening. Children with disabilities, unable to legally make their own decisions, are not comparable to sick pets. Promising futures should not be allowed to be stolen for selfish reasons.
theoftenator 