Alyssa Silver: Daring to Be Remarkable in the Face of Spinal Muscular Atrophy

Photo: Alyssa Silva and her brother. Source: Huffington Post.

It would be so easy to let a life-altering diagnosis take control, especially when the diagnosis is spinal muscular atrophy (SMA). SMA is a genetic disorder that causes the voluntary muscles to waste away. In other words, this rare disorder causes the muscles that are controlled by an individual’s will, mainly their arms, legs and back, to weaken and eventually stop working altogether.

There are different levels of severity of the disorder. The most severe cases are sometimes diagnosed while still in utero, typically later in pregnancy; these cases are often referred to as type 1 SMA and sadly, many infants don’t live past their 2nd birthday. Other times, flags are raised when babies and toddlers do not develop at the same pace as their peers. Instead of sitting-up, crawling or starting to walk, the kids with the disorder maintain the same level of floppiness that is normal for infants. These cases fall into types 1 to 3.  Type 4 SMA is typically developed later in life when the patient is an adult.  

Regardless of when the diagnosis happens, the results are pretty much the same. The individual will end-up using a wheelchair, requiring lifelong help and support, and will often have a lower life expectancy. 

In so many words, this disease could be classified as devastating. Any individual who has to deal with SMA would be expected to lead a pretty secluded and quiet life. That expectation, however, was changed by the musings of one Alyssa Silver, who is not only living with SMA but is doing so while showing the world that despite her condition, it’s possible to live a remarkable life. 

When life gives you lemons

Through her blog alyssasilver.com/blog, Alyssa shares the ups and downs of living with SMA, and how it not only affects her, but also her family and friends. Her motto is simple: live a remarkable life by daring to be something better. Using her three pillars of strength, or as Alyssa refers to them, her three “F” pillars - Faith, Family and Friends, she has:

• Started a non-profit organization
• Was one of the first adults to receive a specialized drug treatment for SMA
• Discovered a passion for serving others

This is nothing short of remarkable, considering she does it with her signature style, cheeky humor and a smile on her face.

Alyssa serves others by her dedication and devotion to a non-profit organization that was started when she was a spunky ten-year-old selling lemonade at $0.50 a cup. Her original goal was to raise $100.00 for spinal muscular atrophy. It was through those lemonade stands, her remarkable support system by her side, and other, perhaps more lucrative fundraising initiatives, that Alyssa eventually raised hundreds of thousands of dollars.

Read on to learn more about how Alyssa Silver's lemonade stand turned into a wonderful organization called Working on Walking.