Whenever I’m asked about how I got started in advocacy for the spina bifida cause, I pause, and cringe a bit. It really is a long story, and the average person’s attention span has wandered long before I’m done telling it. Here’s the short version of it:
I was born.
In 1986, there wasn’t as much information on the link between folic acid consumption and a reduced risk of neural tube defects as there is today. Nowadays, a pregnant woman, or a woman trying to conceive has a plethora of resources, including online, readily available to her during this very important phase of her life.
Maybe it had absolutely nothing to with folic acid. Regardless, for whatever reason, I was born with myelomeningocele, the severest form of spina bifida.
In 1990, when I was three, my parents made the drastic decision to move from Puerto Rico to Orlando, Florida. Even though I had wonderful doctors in Puerto Rico, a clinic for children with spina bifida had just opened in Orlando, and they wanted to offer me every opportunity to have the best quality of life possible.
At age 10, after a lifetime battling surgeries, countless hospitalizations, and even teasing and bullying, I decided I could harness the power of writing to make a difference for people with spina bifida. I wrote about living with spina bifida for an essay contest at my school, and that was it— my purpose became clear.
Still in grade school, I began writing letters to celebrities and public officials, in the hopes of finding someone who would be willing to share the spotlight with the spina bifida cause — a spokesperson.
Thirteen years later, and barely a handful of replies later, I took to the online platforms to aid me in spreading the word. I began a daily blog chronicling my life and personal experiences with spina bifida, with a simple call to action: to find a public spokesperson for people with spina bifida. I called it “Holdin’ Out for a Hero.”
With each passing day that very few people visited my blog, my frustration seemed to snowball. I was quite familiar with this feeling of frustration, having published an article in a local, Spanish-language newspaper years before about the importance for Latinos to get involved in spina bifida-related organizations. I wanted so badly to reach out to all my fellow Latinos, grab them by the scruff of their necks, and get them to listen.
I was experiencing this same frustration, on a less-filtered platform. And I felt alone.
And then, something amazing happened. People began to write to me. Mothers of young children with spina bifida started e-mailing me, congratulating me on my blog and even thanking me for writing it. This stunned me—and then I found out why they thanked me.
Many moms wrote, “My Ob-Gyn recommended I abort when I found I was pregnant with a baby with spina bifida.” “They said it was going to be a vegetable, a monster.” “They told me she would have no quality of life.”
Oh, how I wish you could all take a look at some photos of these “monsters” on my Facebook feed! They are adorable, high-spirited, persistent, stubborn, intelligent, and completely captivating. And they have spina bifida.
So, it’s been three years since those lonely first days as a blogger. A lot has changed. I’m no longer blogging every day, although my commitment to the cause often keeps my brain running late at night. I’m currently on the board of the Spina Bifida Association of Central Florida, and I’m raising funds for our second annual Walk-N-Roll for Spina Bifida. (Click to support Team Holdin’ Out for a Hero.)
I also have acquired a lot of information that I didn’t have before. In celebration of October being Spina Bifida Awareness Month, here are a few startling truths I’ve learned along the way:
- Latinos have the highest incidence of spina bifida out of all ethnic groups, according to the Centers for Disease Control and Prevention (CDC).
- Spina bifida is more common than muscular dystrophy, multiple sclerosis, and cystic fibrosis combined.
- Spina bifida is the number one cause of paralysis in children in America.
- Right now, there are an estimated 166,000 people living with spina bifida in the U.S.
- While society might still treat spina bifida as a “childhood disorder,” advances in medical technology are allowing the majority of people with spina bifida to live a normal lifespan.
- According to several medical studies, people with spina bifida are more prone to developing depression after the onset of puberty than people without spina bifida.
- The last fact is probably why I’ve chosen to focus my personal energies on raising awareness on the need for a better continuation of health care throughout adulthood. When children with spina bifida grow up and become adults, they will often fall through the cracks of medical care, often not being able to find adequate adult medical specialists.
Most importantly, as a comunidad we must be proactive for our fellow Latinos, especially those who have just moved and don’t know what resources are available to them. There is a dire need for more bilingual resources, so that those who do not understand English will still be able to find the best care and support for their families.
Above all, we need to truly become our hermano’s keeper and be compassionate toward one another. Three years ago, I never dreamed that I, a single, childless woman, would become a resource for moms of children with spina bifida, who eagerly want to know what awaits their children down the road.
My desire to continue that good habit of being my brother or sister’s keeper is why I’ve decided, in honor of October being Spina Bifida Awareness Month, to share one fact or truth from my personal life with spina bifida, each day, all month long.
I encourage all who are reading this to share at least one fact this month; maybe not each day, but at least once a week, with someone who doesn’t know about spina bifida.
When I look back on the three years that catapulted me on the wildest, most humbling journey I’ve ever been on, the journey that caused me to ‘hold out for a hero,’ I have to smile. Instead of just one hero, I’ve been blessed with a community of supporters and fellow advocates.
And I smile to think of just how many people in my own personal ‘village’ have blessed me by allowing me to be a part of theirs.
Laura “Laurita” Tellado directs the Latinos in Social Media (LATISM) Central Florida chapter and won the “Best Latina Health Blogger” award at the LATISM 2011 Awards. She serves on the board of the Sprina Bifida Association of Central Florida and is a member of the National Association of Hispanic Journalists. Follow her on Twitter @Laurita86, or email her at firstname.lastname@example.org. Also, to learn how you can participate in a spina bifida-related genetic study, visit the Spina Bifida Genetics Research Project site in English or español. Laura manages their Spanish social media on Facebook and Twitter.