In Case You Are Jealous of My Friday Night

People often comment on my Facebook posts (especially fellow ladies!) saying what a fabulous life I have. They see me gliding from event to event, effortlessly, cozying up to public figures and instagramming delicious food (and coffee drinks)!

I don’t blame you all for commenting, or even feeling a twinge of jealousy or resentment. It’s natural, and to be completely honest, the same thing goes through my mind when I’m instagram- or Facebook-stalking my friends and colleagues.

But, do you want the brutally honest truth? Because here it is.

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There’s A LOT that gets filtered out of my life when I post on social media. Like, a hell of a lot. When I publish a photo of me in a gorgeous dress with my hair and makeup flawlessly done at an event enjoying the company of others, here’s what you don’t see:

You don’t see/hear the laughably-inevitable meltdown/pity-party two hours earlier about not being able to wear the shoes all my other girl peers are wearing (heels, stilettos, etc.).

You don’t see the panic attack I’m having as I’m rushing to make it out the door on time and have to stop and raid every drawer in the house for urinary catheters. Since they are delivered and I need a doctor’s prescription, it’s not like I can waltz into a public restroom with a few quarters and get a catheter out of a dispenser. (But you can easily find tampons or condoms, no doubt!)

You don’t see the frustration I feel when trying to find the perfect purse to match my outfit— that is, one that is sleek enough to carry easily but that will fit at least 5 catheters (because when your LIFE depends on using a plastic tube every three hours, there’s no room for guesstimating. Better to overestimate than…God forbid. And if I have an infection…forget it.)

You don’t see me up all night with indigestion because my digestive tract is much slower than everyone else’s. That expensive dinner I had cost me a good night’s sleep.

But most of all, you don’t see the struggle it is as I try my best to “fit in” (say what you will about being an individual, but don’t kid yourself— EVERYONE wants to fit in) while treading the delicate balance of staying “healthy” (whatever that means, because I haven’t felt “healthy” in many years) and being able to breathe easy and have some semblance of a social life.

That all being said, I know how truly fortunate I am. I have opportunities that many of my peers with spina bifida do not. I don’t lose sight of that.

But, today is Friday. Tonight, God willing, I actually am going out on a Friday night alone (a rare occurrence!) to attend a social / professional function. Just a while ago, I got off the phone after talking to my medical supply provider and my urologist’s office back-to-back. It feels like I am constantly having to negotiate how important a life-saving product is to me. Negotiate how many times a day I am allowed to pee. Can you imagine having your visits to the bathroom regulated? These are questions I actually get from my doctor’s office. (They will actually insist I drink more water, and then ask me why I use so many catheters!)

Not to mention my private medical insurance, which makes me jump through bureaucratic hoops just to be able to receive these bare necessities.

I don’t want to be calculating. I don’t want to be counting catheters. I don’t want to leave half of my meal untouched because I’m afraid of indigestion. I don’t want to walk into the place and immediately scan where the bathrooms are. I don’t want to wonder where I’ll park my wheelchair.

Tonight, I just want to act my age, and know that I’ve earned it. Tonight, I don’t just want to LIVE, I want to feel ALIVE, and know that my posts on social media actually reflect the fabulous reality.

The Laurita Spina Bifida Project to launch at Hispanicize 2016

Why, yes. It has indeed been a while.

Mea culpa. I may not have been fully “present” on Holdin’ Out for a Hero, but please rest assured…incredible things have been happening behind the scenes– miracles, actually!

Today, after 19 years of wishing, learning, waiting, and hoping, after years of prayers, all answered, not all in the way I anticipated, after much hard work and informal advocacy, it’s happening.

My non-profit organization, The Laurita Spina Bifida Project, is launching today during Hispanicize 2016– in Miami, no less.

Don’t pinch me, please. I don’t want to wake up!

It’s been a long time coming. I mean, really. I remember growing up thinking that starting any kind of organization– for-profit or non-profit– required wealth, and lots of it.

I remember wondering why I wasn’t rich and able to fulfill my dream.

I remember writing my first letter to Oprah Winfrey, and pouring my heart into it, asking her to shoot an episode about spina bifida. And I remember very clearly the polite “no, thank you” letter I received from The Oprah Winfrey Show– at age eleven.

Sometimes I wonder why I just didn’t give up and pursue a different path. I believe anyone with spina bifida can be just about anything within some reason. I could have done anything.

Instead, I chose the road less traveled. The one that hadn’t been trodden before– the one I had to pave myself.

But I haven’t walked it alone. Oh, no. There have been angels. Dozens, hundreds, perhaps thousands of them. And they carried me on their wings whenever I was too exhausted, too angry, too bitter from the failed efforts to keep flying.

It is now that I realize it. My “failures” weren’t failures at all– they were practice; my boot camp. With teachers, mentors, trainers, fellow advocates, cheerleaders, I worked through these failures and got up again.

My initial vision was to host a launch event at a restaurant in Orlando, close to where I live. Instead, I am in the heart of Downtown Miami, surrounded by fellow bloggers, journalists, entertainers, photographers, marketers, and seasoned non-profit industry veterans. Many of these are people I call very close friends.

In retrospect, I cannot imagine launching my precious childhood dream anywhere else, surrounded by so many of the people who are actually helping to make it happen!

Today, as I prepare to meet friends, family, and colleagues for Happy Hour at Toro Toro Miami and our extended community on Twitter at 5:00 p.m., I’m sure we’ll have a lot of last-minute details to think of.

As for me, I’ll also be reflecting on everyone, everything, every incredible moment that has brought me– us– here.

Today, I finally know it was all for good.

Please join us today on Twitter using the hashtags #TheLSBProject and #SpinaBifida (#EspinaBífida para español, también). Be sure to RSVP here to be eligible to win some awesome prizes!

And if you’d like to contribute to our crowdfunding campaign, that’s here.

To see the fabulous press release that my friends and colleagues at Hispanicize Wire published about our launch, please click here.

 

Till tonight! And…thank you. 

Love,

Laurita

My Actual Letter to the Mother who Aborted her Baby with Spina Bifida

 

A note to my readers: 

Recently, I received an E-mail from a mom who contacted me for advice. She had a pregnancy affected by spina bifida, and at the recommendation of her doctor— she chose to abort. In addition, she wanted my advice on how NOT to have another baby with spina bifida. As you might have read in my previous post, I felt the entire gamut of negative emotions upon opening and reading that E-mail— anger, sadness, judgment towards her, and just an overall sense of melancholy that seemed to pervade my emotions for several days. 

In a desperate attempt to sort out my thoughts, I took to the only place I felt I could safely share my heart— this blog

 

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The backlash was almost immediate. I expected there would be pro-choice advocates (I am still very much on the fence in the abortion debate— so don’t ask me) who would argue that she acted on her rights. Really, I anticipated that. 

What I didn’t expect was the anger and vitriol that spewed, even from moms of children with spina bifida who know me personally. I was accused of not being a good advocate because a good advocate “doesn’t think of her own feelings.” 

How is it even possible to do that!? I could never put my own feelings aside, for it was my own feelings that helped me become an advocate for the spina bifida community. It is my emotions that fuel my passion for activism and education. I could never turn off my emotions. That is just absurd. 

However, I also was not prepared for the outpouring of love, support, and encouragement from many friends and followers who applauded my article. They felt it was a good tribute to how many parents of kids with spina bifida— and adults with SB, especially— feel when they come across stories like these. I will be forever grateful especially for these people, for they buoyed my spirits up during one of the most challenging times I’ve encountered in my 5+ years of blogging. 

What a difference four days makes! 

After a few days away from the circus (really, it was ridiculous!) I decided to finally reply to this woman with a clear head and lighter heart. I’ve also been physically sick with various illnesses which have had me very preoccupied. 

So, without further ado, this is what I actually said to her— verbatim, raw, uncut, no edits. And it was from the heart. 

 

Dear _____________,

Thank you so much for contacting me. I can’t imagine how difficult it must be to contact someone with spina bifida after losing a baby with spina bifida.

First, let me say I am very saddened and sorry for your loss. However you lose a baby, it is heartbreaking and it must be so difficult. I admit, upon first reading your E-mail, I was quick to judge you. I felt angry that you did not want to have a baby with the condition that I have, as if having spina bifida means that my life is not worth living. This is why I did not answer you immediately. But after much thought, crying, and praying, I have come to realize that there are many like you who do not have the information they need to make this decision. I know for a fact that many doctors put pressure on mothers to have an abortion when spina bifida is diagnosed.

I have lived with spina bifida my whole life, but I have never been a mother, so of course, my advice is based on what I know from having spina bifida myself.

But, I receive many E-mails from mothers who are pregnant with a baby with spina bifida, and many who have children with spina bifida.

Let me start by saying that there is no way to guarantee that you won’t have another child with spina bifida. Nobody can promise you that.

Sadly, there has not been much research or information about spina bifida until recently. Honestly, the only way to guarantee that you won’t have a baby with any disorder or disease is to not get pregnant. A B-vitamin called folic acid has been shown in recent years to help prevent a child from having spina bifida, but even if you take it as recommended by a doctor, it only works about 70 percent of the time. So, that is not going to promise you a baby without spina bifida.

Here is the link to some information about folic acid published by the March of Dimes, a wonderful organization that helps prevent birth defects and support families of children affected by birth defects: http://www.marchofdimes.org/pregnancy/folic-acid.aspx

Finally, because you seem very determined to not have a baby with spina bifida, the final piece of advice I can think of offering you is this: if, by chance, you do end up having another baby with spina bifida, please know that it is NOT a death sentence, or a tragedy. 

I have met many, many families who have children born like me, with spina bifida, and who, like me, grow up to be happy, successful, even healthy adults. Yes, they sometimes go through many surgeries or other medical complications, but most can grow up happy and make friends, and as adults, get jobs, go to school, and even get married and have their own families. I have played with many children with spina bifida I have met through these families, and they are absolutely beautiful and precious, and very smart and active.

It is possible to have spina bifida and live a happy, healthy life. 

I work as a blogger, writer, and social media professional. My work has taken me to different places, as I am often invited to speak at events and conferences around the United States. I have connected with adults with spina bifida and families all over the world who reach out to me for advice or simply to know that someone else understands.

I do not mean to say that I never get sick or feel pain, because I do. I have had 19 surgeries and many, many hospital visits. My family has been through a lot, and it is not easy. Pain is a part of life, and even “healthy” children will get sick, get hurt, and suffer at some point. Every parent feels their job is to take away their child’s pain, but like my parents have done with me, their job is to stand by me, to hold my hand when I am having a hard time. They are my best friends and love me so much.

So please don’t think that having spina bifida means I have had a horrible life. Thank God, I live a wonderful life and I feel grateful for every minute of it.

I hope this serves to encourage you, no matter what doctors say, no matter what others say to you, to be the best mom you can be for your child, whether he or she has spina bifida or not.

That’s all you can really do.

 

May God Bless you and please contact me if you want to talk some more. I am here.

Laurita

 

It’s Never Too Early #RSVawareness #PreemieProtection

 

This is part of a sponsored collaboration with MedImmune and Latina Mom Bloggers. However, all opinions expressed are my own. 

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As many of you know, one of my greatest passions in life is raising public awareness of spina bifida and the challenges that affect people living with SB, as well as the accomplishments, talents, and abilities of these very people.

Along the way, I have become aware of so many other worthy causes, in particular other serious conditions and illnesses that also deserve awareness and publicity. It is in sharing information about these causes that I find great purpose.

November 17th is World Prematurity Day. (It’s actually the day after my birthday!)

With many wonderful awareness initiatives, walks, and fundraisers that now take place nationally, it’s awesome to see that much of the public is now more informed about the incidence of premature births.

What many don’t know about, however, is a disease that affects many premature babies– respiratory syncytial virus, or RSV.

It was the lack of awareness of spina bifida that encouraged me to begin writing this blog in the first place. And now, it’s the lack of awareness of RSV among parents that has compelled me to partner with MedImmune to share this vital, potentially life-saving, information. 

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RSV is a very common seasonal virus that affects nearly 100% of babies by the age of 2. 

Here are some fast facts about RSV and prematurity that  every parent needs to know: 

  • Each year worldwide, 13 million babies are born prematurely
  • 75% of parents don’t know the definition of prematurity (birth at or before 37 weeks gestation)
  •  Most pregnant women don’t ask their healthcare provider about the risk of delivering prematurely and the potential consequences of preterm birth for their child
  • Severe RSV disease is the leading cause of infant hospitalizations in the U.S., with approximately 125,000 hospitalizations and up to 200 infant deaths each year.
  • RSV season usually occurs from November through March for most of the U.S., but it varies regionally, and from year to year.

 

Most of the moms I’ve befriended or who befriend me on social media have a child with spina bifida. As pillars of strength and examples of grace and perseverance for their families, these women would do anything for their families, and it would break my heart to hear of one of their children falling ill with RSV, especially with everything else they already have to deal with because of spina bifida. 

This is why I feel it’s so important for me to share the symptoms and warning signs to look out for when diagnosing RSV. Parents, please be on high alert if your child exhibits any of these symptoms: 

  • Persistent coughing or wheezing
  • Bluish color around the lips, mouth, or fingernails
  •  Rapid, difficult, or gasping breaths
  • Fever (especially if it is over 100.4°F [rectal] in infants under 3 months of age)

There is no specific treatment for RSV disease, so prevention is your best bet. That being said, here are a few simple parents should take to help reduce the risk of your child getting RSV, particularly during high season, which is from November through March:

 

  • Understand the risk factors and ask your child’s pediatrician if your child may be at increased risk
  • Wash your hands and ask others to do the same
  • Keep toys, clothes, blankets, and sheets clean
  • Avoid crowds and other young children during RSV season

 

Yes, this information may seem very overwhelming, and I’m sure that it’s nothing that parents want to even think about. But, as the tired old saying goes, “it’s better to be safe than sorry,” and by taking the proper precautions, parents, especially those whose children have other health issues, will have one less thing to worry about. 

And it’s never too early– or premature— to take good care of our children!

For more information and tips, you can visit www.RSVprotection.com.

 

5 Simple Ways to Help Someone Living with Spina Bifida / #GivingTuesday

 

Giving Tuesday

 

 

Today is Giving Tuesday, a movement for social good that is taking social media outlets by storm. 

Thousands and thousands of people are sharing ways in which we can all give back to great causes. 

I don’t wish to add to the cacophony of causes by asking you to donate to this or that. Instead, I want to give all of you — even those with limited funds some tips on how you can support a friend or loved one who has spina bifida, or who lives with someone who has spina bifida (caregivers need support, too!) 

So, read on for some musts and must-nots.

 

1. Don’t exclude us from social gatherings. 

I remember how painful it was growing up, and the teen years were just as awkward as my early years. It hurt me deeply when I found out some of my girlfriends were hanging out and choosing not to invite me. The reason? They thought I might bring my mom along. Although it wasn’t true at all, it still hurt. My so-called friends didn’t think I was independent enough to attend a social function on my own, without my parents at my side.

If you have a friend with spina bifida, ask them what hobbies or activities they enjoy. Invite him or her to your next outing. If you have any doubts as to what their capabilities or limitations are, ask, but never assume. 

 

 

2. Ask us for help or advice when you need it. 

Believe me. This can actually be one of the greatest gifts you will give someone with spina bifida. Many of us with spina bifida are so tired of being “helped” all the time, and many times people won’t approach us to ask a simple favor out of fear that we won’t be able to help, or we’re too “burdened” by our lives. That, if you ask me, is an even greater burden.

So, go ahead and ask! The worst possible thing we could say to you is “no.” 😉

You might even find that we have a lot to offer and give to others. 

 

 

3. Don’t tell us about every medical study you’ve read about pertaining to spina bifida! 

No, seriously. We don’t want to hear it. Especially if it involves the prevention of spina bifida, medical research is based on a lot of different variables, and while your intentions may be noble, mentioning something like this can sound like you’re trying to “fix us.” Most people with spina bifida go through countless surgeries and hospitalizations, and often have different therapies to learn to maximize their potential, physically. Many times, if there is a procedure we can benefit from, chances are it’s already making the rounds in online support forums for families with spina bifida!

 

 

4. Don’t tell us God will heal us, or that there’s a reason we have spina bifida. 

I’m a deeply religious and spiritual person, and I have my firm beliefs. I personally do believe things happen for a reason, but if you’re saying this to me after I tell you about spina bifida, you’ll come off like a total jerk. Does that mean God chose for me to deal with spina bifida? Maybe. Then again, there are a lot of great things in my life that have come from having spina bifida, and also, a lot of great things that don’t have absolutely anything to do with that.

Still, never put us on pedestals because of having spina bifida. That’s just…creepy. 

 

 

5. We’re not sheltered. You can talk to us about…anything. 

I don’t know where this crazy misconception was born that people with spina bifida aren’t exposed to certain things– like sex, alcohol, rock n’ roll, the rise and fall of Communism, and Miley’s infamous twerkfest. 

We’re human. We read the tabloids from time to time, usually in the bathroom, just like you do. 

And we also like to party. Hey, you can’t expect us to sit around and watch C-SPAN all day, right? (Fun as it sounds.) 

What’s more, many of us have graduated high school, or even college or grad school. We like to talk. And I love Google and Wikipedia! So, even if I don’t understand what you’re talking about, give me about 30 seconds with my phone to impress you. 😉

Oh, and we also have brag-worthy lives filled with riches and diamonds and yachts and filthy-rich-jetsetting, so make sure not to hog the entire conversation. 😉

 

 

Hopefully that sheds a little light on some basic things you can do to keep someone with spina bifida in your life. (Yes, we grow tired of being overlooked, just like you would!) The most important thing to remember is that our lives don’t revolve around having spina bifida. There are so many facets of our lives, and many of them are similar to yours. 

Also, like you, we hate twerking.

Happy Giving Tuesday!  

–Laurita ♥

I’ll Show You My Reasons

 

Author’s Note: This post was written in October 2013. Over a year later, I still feel this way. Thank God Nicholas made a full recovery from his injuries described below. But his and my family– as well as so many other families– continue to wait for hope. We wait for awareness. 

 

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October is Spina Bifida Awareness Month. We’ve just made it past the half-way mark, and already I’m feeling like a broken record. 

I’m angry. I’m sad. I’m frustrated. I feel helpless. And all because it’s October. 

October is Spina Bifida Awareness Month. 

It’s also Everything Else Month. 

I’m not angry at the other causes– breast cancer, down syndrome, domestic violence– how could I be? They are valid, serious causes, every bit as worthy and deserving as spina bifida of being recognized and honored and supported, not just in October, but every month. 

I’m angry because the excuse that many people give to not support the Spina Bifida Cause is because they are busy supporting these other causes. 

I’m angry because they don’t get it

I’m angry because they believe spina bifida is less serious. Less worthy. Less important. 

On Monday, I visited Nicholas in the hospital. Nicholas is an eight-year-old boy with spina bifida and hydrocephalus. 

Last week, he was the victim of an unexpected, traumatic and heartbreaking incident when he was attacked in a park. While I won’t go into the details here, because it’s a situation that has caused his family– and all of their friends and loved ones– so much pain, suffice it to say he suffered two concussions and began having frequent seizures. 

These seizures could be enough to cause him irreversible brain damage. He already has developmental and speech delays because of the many neurosurgeries he’s had. 

How is Nicholas doing now? Thank God, he’s out of the hospital, as of last night. I’ve been in frequent contact with his mom, Cheryl, who is my very dear friend and who slept at his side every night in the hospital. According to her, his seizures are now under control, but only time will tell if he will get back all of his cognitive functions.

He’s not himself right now, she told me. Indeed, when I went to see him on Monday, the usually cheerful, calm eight-year-old was impatient– he even walked right out of the hospital room at one point, determined to visit the playroom. When he didn’t get his way, he growled and screamed unintelligibly, clearly frustrated.

Cheryl noted that he never behaves this way. She misses her sweet little Angel. 

There was one moment that stood out in a positive way for all of us, when a young hospital volunteer stopped by to perform magic tricks.

Nicholas lit up. His mother, and all of us that were in the room with them, watched in amazement as Nicholas even verbalized what he was feeling. He wanted to know “how he did that” when he demonstrated a trick. He walked right over to the young man and did not take his eyes off him the entire time. 

Watching him was, indeed, magic. 

Of course, many causes will demand your attention– this month, and every month. All of these are important, and we should take the time to learn as much as we can to help those we love– and ourselves– prevent illnesses and other devastating circumstances.

But, to a child living with spina bifida– and to the family that cares for him or her– often, there is no frame of reference outside of spina bifida. Sometimes, there is no escaping the uncertainty and pain that comes from knowing that someone you love is suffering. 

There are plenty of moments, like the one we witnessed with Nicholas, when you get a glimpse of hope, of recovery, of that return to the simple joys of childhood as it should be.

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Happier times. Celebrating my birthday 2 years ago with Nicholas and his family– dad Jerran, mom Cheryl, and big brother Daniel.

But spina bifida complicates things. They can turn even the most common illnesses and injuries into a nightmare. Sometimes, we lose hope. 

During those moments, we try to choose to hold on to the moments we’ve enjoyed– the moments that make us laugh out loud, even through tears. The trivial moments. Sometimes one trivial moment can matter more than 1,000 serious moments.

But, my anger remains unassuaged. People still dare to question why this matters to me. 

I can only think of one good reason: 

Because I’ve been there, too. 

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Just days after I was born. The battle to survive and thrive with spina bifida begins almost immediately after birth for most of us.

 

BlogHer was very gracious in allowing me to share my story with their many followers! Please read, comment, share my post, and let BlogHer know that we need more stories about spina bifida awareness. 

Love,

Laurita

A Different Campaign Continues

Yes, I know there are other things going on today. Namely, one big thing— the most historic presidential election in U.S. history. Don’t think I’ve forgetten; I’ve already voted! 😉

But after weeks of being bombarded on both my Facebook and Twitter feeds with political post after political (or apolitical) post, I wanted to take a breather and reflect on the awesomeness that was October.

The beginning of November marked the end of Spina Bifida Awareness Month for this year. To say it was a smashing success would be the understatement of the century– we killed it! 

But the campaign isn’t over. Yes, the Walk-N-Roll donation link is still active. Please share, and donate away!

There are so many issues at stake besides prevention– quality of life for children and adults alike, educating Ob/Gyns about the facts on spina bifida so they can give impartial but encouraging information to expectant parents, and not to mention those with spina bifida all over the world, many who might not be as fortunate as we are to have such a strong community.

I know I’ve thanked you over the past few weeks for all your support– but there are a few people and organizations that I would like to reiterate my thanks to.

First, I need to thank Bravo! Cucina Italiana for their support and for providing the location for my local fundraiser for the Walk-N-Roll for Spina Bifida. We raised $120 that night, and we also raised awareness!

Also, I want to take the time in this post to personally thank each and every one of the sponsors, bloggers, and supporters of the very first Walk-N-Roll for Spina Bifida Twitter Party I co-hosted on October 17th.

 

Chantilly Patiño was the driving force that organized, planned, coordinated and then hosted the Twitter chat. She also sought out sponsors, got us donations for prizes raffled during the Twitter party, and wrote up the script and designed the promotional graphics. Have I said THANK YOU? Not enough!! Chantilly has indeed become a wonderful friend, fellow advocate, and key supporter of my spina bifida campaign.

Chantilly also took it upon herself to help me moderate the Spina Bifida Advocacy Network, which we officially launched during the Twitter party. Currently, our group boasts nearly 500 members and growing!

When all was said and done, our jaws dropped collectively when the Twitter party report revealed we had nearly 2 million impressions! A truly miraculous, magical night for the Spina Bifida cause.

Now, it’s time to really recognize all the sponsors/organizations that made it happen. I encourage you all to visit their Web sites and support them in whatever way you can!

 

 

Whether they blogged about the awareness campaign, donated a prize for the Twitter party, co-hosted the party with us, or simply sent us good vibes, all of these sponsors now deserve to be showered with love!

A very special thanks goes out to Latino Rebels for immediately following up the Twitter conversation with a TweetReach report showing that social media can make a difference for a great cause!

 

 

I could never thank them enough for taking that extra step to ensure everyone understands the significance of that night!

 

So yes…a very special election is taking place today in the U.S. I’ve already voted, and I hope you get out to vote, too! But as far as my preferences and values are concerned…my vote goes out to the Spina Bifida cause. I believe in it, and I hope you’ve come to believe in it as strongly as I do.

Yes, October is over. But now the real work begins– which is to keep spina bifida in the public eye, and in the minds and hearts of everyone.

 

Love,

Laurita ♥

Awareness: The End, Not the Means

When I set out to be captain of my own team again for the SBACFL Walk-N-Roll for Spina Bifida, I never imagined just how many people my humble efforts would reach– in Central Florida, as well as beyond.

On Wednesday night, Chantilly Patiño of Multicultural Familia and Bicultural Mom moderated our very first Walk-N-Roll Twitter Party for Spina Bifida.

An unprecedented online event meant to raise both funds and awareness, we managed to raise $120 for the Spina Bifida Association of Central Florida. More importantly–we did raise awareness. During this Twitter party, the hashtag #SpinaBifida had nearly 2 million impressions! This is a huge leap forward for the spina bifida cause.

I could never thank Chantilly and all the sponsors and co-hosts enough for all their hard work and dedication to this cause. I’m truly moved by everyone’s show of support. I was also amazed by how many joined the conversation– both people who had been touched by spina bifida, and people who knew nothing of spina bifida before this event. Both groups alike joined forces for this effort, and I will always be grateful to all of them.

On Thursday evening, I hosted another event– in person, at Bravo! Cucina Italiana, here in Orlando. Proceeds from ticket sales benefited the SBACFL Walk-N-Roll for Spina Bifida.

An intimate crowd joined us in support of The Cause, including two families who are part of the SBACFL. A special thanks to Amanda Kern, who took some beautiful photos of the event.

 

 

 Why, oh why did I have my eyes closed for this one? An otherwise beautiful family portrait, taken by the ever-attentive Bravo staff.

 

Bravo! Cucina Italiana General Manager Michael Monahan was the one who made it all happen that evening. Thank you so much for caring about the Spina Bifida community! :)


*SIGH* At every event I attend or host, I have to put up with another of Mami’s gratuitous photo shoots. #Mamarazzi

 


Our friend Giancarlo came to support our event!

 

My good friends Brett and Krystal also came out to support me! Love them.

I’m always grateful for Vionet-Edith’s support. She’s a true friend…part of the family. :)

Attendees were greeted by an assortment of appetizers and enjoyed drinks on the terrace. We couldn’t have prayed for better weather!

Speaking of prayers…my beloved priest, Father Bassam, was there to support me and my family.

 

 

I was able to share special moments with other people, including a camera crew from the UCF Cornerstone program. These college students from my alma mater are volunteering for New Hope for Kids, another one of my favorite organizations, and they showed up to interview me about my experience as a wish recipient!

 

 (There’s more photos where that came from! Stay tuned. :)  )

 

Another priceless moment that evening was reuniting with Amanda’s son Chance. Now 20 months old, this incredible little guy has touched so many lives already. Ever since the first time I met him over a year ago, I’ve felt a very strong connection to him. He is definitely very special to me. I love Super Chance! :)

(Note: All the following photos are courtesy of AmandaKern.com.)

 

 

My wonderful family is always so incredibly supportive. I couldn’t do any of it without them!

 

 

It’s true– Amanda went on a *photo* shooting rampage during the event– expect to see some photos of all the Walk-N-Roll team captains as part of the Walk-N-Roll for Spina Bifida publicity campaign!

Other attendees included Shannon Celentano’s family, Dede Mischel. Thank you so much for your support!

When all was said and done, we made $120 for the Walk-N-Roll. Hmmm…I guess that’s my number. Maybe I should play the lottery…?

I feel remarkably blessed to have so many people supporting me. Whether it’s online or off, in person or from afar, there are so many ways that people can impact a life, support a good cause.

So, thanks to each and every one of you who attended and/or promoted either the Twitter party and/or the Bravo! event. I’m amazed and humbled by your love and support.

As if these events weren’t enough to send me into “awareness overload,” a truly remarkable meeting took place on the Saturday following the Bravo event which some of you heard about on Facebook. Yes, I actually met Judy Woodruff of PBS NewsHour for the first time in person, while she was in Orlando covering the campaigns.

 

During our meeting, Judy eagerly agreed to an interview! Below is our chat.

 

And when all is said and done…whether you have given a donation or spread the word, you are helping! Awareness isn’t just a means to an end– it is the end we’re searching for.

 

Love,

Laurita ♥