Since the age of ten, I’ve had a goal, a dream, or a mission—whatever you want to call it. I was born with spina bifida, the #1 cause of paralysis in children in America. I realized at this young age that, despite spina bifida being more common than muscular dystrophy, multiple sclerosis, and cystic fibrosis combined, there was very little awareness or recognition of this condition in the mass media. It just isn’t a household word.
Latinos happen to have the highest incidence of spina bifida out of all the ethnic groups. Researchers think this is mostly due to low consumption of folic acid, a vitamin of the B-complex, in would-be mothers.
About a year and nine months ago, I didn’t have a very clear vision of who I was nor who I wanted to become. I was starting my senior year of college at the University of Central Florida, but I felt less than passionate about it. Despite not making many friends at UCF, I enjoyed being able to spend plenty of time with my family.
One day, Mami and I were at the movies watching “Julie & Julia,” about a young urban wife who blogs about her adventures making every single recipe in the Julia Child cookbook—and writes every day for a year. As the movie ended and the credits rolled, Mami turned to me with that all-too-familiar, wide-eyed, crazed, harebrained-idea expression on her face and blurted out, “Oh my God, Laura, you have to do that!”
I didn’t have a mirror, but I’m sure my reaction must have been one of utter bewilderment and confusion. After all, we both knew I wasn’t going to attempt to cook my way through anyone’s cookbook, let alone Julia Child’s. I could barely make pancakes.
Then she spoke the words that were about to forever change my life, in ways unimaginable: “You have to start writing a blog.” And that’s how it started.
Immediately, I set an ambitious, if pretty idiotic, goal for myself: in order to really put the spina bifida cause on the map, I would blog every single day for a year—that meant I would be undertaking this challenge during my final three semesters of college—with a full-time class load. I also proposed to profile a celebrity, public official, company or non-profit organization each day on my blog, and then reach out to them and ask them to “adopt” spina bifida as their cause.
Once I decided on a name (“Holdin’ Out for a Hero,” after the “Footloose” song I couldn’t get out of my head!), I had the real bulk of the work ahead of me. This involved promoting my blog/initiative using every single social media outlet I could imagine. Not a big Facebook person, I was suddenly on Facebook 24-7 after creating a fan page. I was going to bed at 3 a.m. after practically nodding off on the keyboard when I experienced connectivity problems at my house (which was often).
But most unexpectedly, I discovered (or developed) a community of supporters and people who’ve been there. Moms reached out to me, and actually thanked me for giving them an insight into what life was like for a 22-year-old with spina bifida. Although I’ve always made it a point to mention that no two people with spina bifida are alike, these moms felt encouraged when they read about the things I had accomplished so far in my short life—things that most people take for granted.
I was appalled when I read E-mails from moms who, when given the news that they were expecting a child with spina bifida, were advised by their Ob-Gyns to abort. At first I thought it was just one woman’s rare experience. But then, these stories began pouring forth from all of my social media outlets—through E-mails, on Facebook page posts, even on Twitter.
I was horrified, to say the least. About 50 percent of kids like me are aborted. Not even given a shadow of a chance. While I believe strongly in women’s rights, I felt angered when I heard about the lies, absolute lies that expectant moms are told about children with spina bifida: “It’s going to be a vegetable,” “there’s no hope,” “it’ll be a monster,” “there’s not going to be any quality of life.”
And yet, after 19 surgeries and many hospitalizations, here I am, now 24, still standing.
That’s when I decided I need to start a non-profit organization to address these issues. I’m currently on the board of the Spina Bifida Association of Central Florida (SBACFL), which exists to prevent spina bifida and enhance the lives of all who are affected by it. I truly respect and admire this organization’s mission, and I strive to live by it each day.
But awareness and education need to go further to address what happens when prevention fails. Women of childbearing age are advised now to taking .4 milligrams of folic acid daily to help prevent neural tube defects like spina bifida. But folic acid only works 70 percent of the time. So, being the devil’s advocate I’ve always been, I can’t help but ask, “what about the other 30 percent, the ones already born with spina bifida?”
The other 30 percent need quality of life programs, medical specialists, and a good education. They deserve to be treated with the same dignity and consideration as any other human being.
Although I’m very much in the early stages of brainstorming and gathering information, one of my short-term goals is to start a non-profit organization addressing a few key areas about spina bifida that are often ignored and that are equally important:
1.) There needs to be a national awareness campaign in all the mass media outlets to educate individuals, families, health care professionals and the public at large about the needs of the spina bifida community.
2.) Health care professionals need to know that people with spina bifida are prone to experiencing clinical depression after puberty, due in part to social isolation. Steps need to be taken to ensure that all young people with spina bifida are provided with the resources they need to deal with mental illness.
3.) Spina bifida needs to be seen as a life-long condition, and not a childhood disorder; people with spina bifida often go years without seeing their medical specialists because there isn’t a seamless transition from pediatric to adult-centered care.
These may all seem like very lofty goals, and to be honest, I still struggle with the question of where I want to go next with this effort. But at least, now, I have a vision. My life has purpose, and I’ve learned a lot more from the people I’ve met along the way than they have with me.
Nowadays, I still blog periodically, or when I have time. I try to update the pages where I share resources with families and individuals, or with people who just want to learn more. There is not a single community event I do not try to attend, if I can promote my cause. Holdin’ Out for a Hero even has followers in other areas of the world, including the United Kingdom, Latin America, South Africa, and Australia.
But above all, I’ve learned how critical it is to take action, and to take it now. Life’s too short, and too precious, to be spent holdin’ out.
To learn more, visit www.holdinoutforahero.org. You can also follow Laura on Twitter: @Laurita86, and like “Holdin’ Out for a Hero” at www.facebook.com/holdinoutforahero . You can E-mail Laura at laurita.tellado@gmail.com.
