In prior posts, I’ve mentioned I have pretty big goals for myself. These goals and desires came out of wanting to do more, earn more, really just be a more well-rounded person. There’s nothing wrong with being ambitious or wanting to leave your mark on the world but it’s also important to take a moment and appreciate what you have in life. About two years ago, I came to a really simple but personally profound realization: I am one lucky guy. I’m 35 years old young enough to still be on the go but old enough to avoid the pitfalls of youth, I live in a fairly quiet suburb of New Jersey with safe neighborhoods and access to anything I desire, and I’m healthy. My parents are still with us and supportive of all my endeavors whether they agree with them or not, I have amazing siblings who inspire me in their own ways, and I have a large extended family I’m close with. I live in a country where I can worship any religion I want, have any political opinion I’d like, and not worry about the consequences. Don’t believe I’m so lucky? Stop and think about the young kid who has to walk to school everyday through a rough area, think about the millions of people living in poverty and squalor all over the world, and think about those stricken with mental or physical ailments preventing them from living a normal life. I know it sounds a bit dramatic and heavy but these humbling thoughts help me be more appreciative of my lot in life. I’ve always been a person who feels obligated to give back to those less fortunate, in the spirit of stewardship. As a young adult I joined multiple non-profit organizations, some local and some national, with a thirst in my heart to help others. I’m not as active in any of said organizations currently for a multitude of reasons, but I still look for the opportunity to volunteer or donate whenever I can. Sadly, an opportunity to help another has come to my attention recently.
The precious baby pictured above is 7 month old Jackson Silva of Garwood, NJ. Jackson suffers form a terrible disease called Spinal Muscular Atrophy otherwise known as SMA. Jackson has been diagnosed with Type I, also known as the Werdnig-Hoffman disease. It is the most severe form of SMA and is the number one genetic killer of children under the age of two. SMA destroys the nerves in the body by depleting it of SMN protein, essential for motor control. In Jackson Silva’s case he is unable to move his arm and legs. He also has difficulty holding his head up. Much of this information I obtained from a flyer given to me by Dave and Maria Silva, Jackon’s Grandparents. I did some additional research on my own and found additional grim and upsetting details about this truly horrible disease. Sadly of those afflicted by type I SMA, only 10% are known to live into adolescence and adulthood. Those who do survive have a greatly diminished quality of life. Worst of all there is no cure for SMA.
Although I don’t know the Silva’s very well their resilience and faith during this extremely difficult time is very moving and a testament to their family and their beliefs. I will be participating in The Steeplechase Distance Walk/Run this coming Sunday (09/28/2014) in Hillsborough, NJ. If you live in the area, Sunday is supposed to be a beautiful day, come participate in the events or purchase a t-shirt to support Team Jackson and SMA research. The last time I posted a link to my blog, my page was suspended for a few days but if you’d like more information go to www (DOT) steps-together (DOT) org, do a web search for “Jackson Silva SMA” or better yet- like and share “Jackson’s Journey”on Facebook. For additional fundraising info or support contact Jackson’s Grandpa, Dave Silva, 908-482-5500 or email ABetterWay2Live@aol.com.
In closing, please consider the following: you too may very well be a lucky person, and I hope you are. I can’t make you to do something but I’m a firm believer in “paying it forward.” Even if you can’t attend the walk this weekend, please consider supporting Team Jackson in any way you are able to. Spread your luck, awareness, and prayers for Jackson Silva and all infants suffering from Type I SMA. Share Jackson’s Journey posts on Facebook, share this blog post, and really draw attention to this vile ailment. Whether or not you attend the upcoming event, please share your experience with SMA or ideas on how we can help Jackson Silva below. In the words of Horace Mann, “Doing nothing for others is the undoing of ourselves.”
Philip A. Maenza aka “Philtastic Phil” is an internet entrepreneur and consumer behavior professional whose interests include art, film, music, stand up comedy, fitness, and comic books. Phil is also a dedicated community volunteer and always open to connecting with like-minded optimists. Phil supports Team Jackson and hopes to see you at the Run/Walk for Jackson on Sunday Sept 28th in Hillsborough.