The Power of Love: Living with Spinal Muscular Atrophy

Photo: Jimmy Valdes. Source: Upworthy.

The Beatles 1967 hit, "All You Need Is Love" pretty much sums up how Jimmy Valdes has overcome his disability to live a full, rich and rewarding life.  After being diagnosed with spinal muscular atrophy (SMA) at the age of 4, Jimmy was taught to focus on what he could do rather than on what he couldn’t.

Spinal muscular atrophy, which is referred to as SMA, is a rare degenerative disease that basically causes the voluntary muscles in the body to waste away. Voluntary muscles are the ones that are controlled by an individual's will. These muscles are what the brain tells to move, like the ones found in the hands, hips, back, and chest. 

Approximately 1 in 6000 are born with an abnormal or missing gene that will lead to a diagnosed of SMA. The disease is inherited from a carrier parent and, depending on the severity of the disease, can even be diagnosed in utero. Other times, symptoms will appear around the 7-month mark and will result in a significant developmental delay in the child. 

The mildest form of SMA, referred to as type 4, will only strike in adulthood, typically after the age of 35. This type of SMA is likely the rarest and symptoms include mild muscle weakness, tremors and twitching. 

From the age of 4, when Jimmy was diagnosed, he was taught that love, above all else, would be his greatest ally in his battle with SMA.

So, now take a moment and think about those Beatles lyrics. Think about how sometimes love is really all that is needed to overcome life's greatest challenges. 

Not being defined by SMA

When a child is diagnosed with SMA, it ultimately means that they will begin a life that is full of medical appointments, physical therapy and the need to help and support every day. SMA patients will need help with everything in their day-to-day life, from hygiene to transportation. For some, this can become a barrier to accomplishing what they want to do in life. 

In Jimmy’s case, his parent’s made it perfectly clear to him, right from the moment he received his life-altering diagnosis, that he would always need help. Despite the fact that Jimmy had SMA, and with their love and support, his parents worked hard to ensure that would lead him to have a life that was as normal as possible. Jimmy played catch, went on vacations, read comic books and, like any other teenager, went on dates.   

When someone gives their unequivocal love and support to a patient who is dealing with a disorder like SMA, they are actually offering much more. They are telling that person that there is a way to reach any goal, whether it’s to play a game of catch or to graduate from university. 

Today, Jimmy is a successful adult who is married and has been employed for more than 20 years.  Jimmy loves his life and faces his daily challenges with grace. Like his parents taught him to when he was young.  

Read on to learn more about Jimmy Valdes' story, and why love is absolutely needed to overcome severe conditions like spinal muscular atrophy.