Guest Post by Dan Alatorre

Today I have the great privilege of having my friend and bestselling author Dan Alatorre, on my blog to talk about LQTS.  He wrote a book called The Long Cutie, which is a group of stories about people with this rare condition, interspersed with stories of his own daughter Savannah (or Savvy) who has this condition but is so far asymptomatic.  Today he’s here, not only to tell us about the book that came out recently, but also to let us know, what exactly, LQTS or Long QT Syndrome is.  So, without further ado, take it away Dan!

Thanks for allowing me to guest blog, Amy. It’s an honor to be here. I will try not to alienate your audience today.

Social media has allowed so many doors to open up for people, and it’s absolutely true for writers and authors. Any book can have a Facebook fan page, where people can go to discuss the book or its topics – and that is how I met Amy.  Back then, she and I were asking a lot of honest, basic questions that new writers needed to know, and nobody else was asking them! (Many writers act like you should start out knowing everything you need to know. If that was the case, what would be the point of a writer’s board or group?).

Because of her kindred spirit of not being afraid to talk about what we don’t know, she and I hit it off. We’ve been friends ever since, and I’m proud to call her my friend. (She may not be quite as happy about being friends with me, but she’s stuck with me now).

My first books (see Savvy Stories below) were about the addition of a bouncing baby girl into my life when my wife and I became parents. The twist was, I was a first-time dad at the age of 47, a time when my friends’ kids were going off to college or getting married. The biggest difference about having a baby at that age is you actually know what your family and friends are talking about when they say things like “they grow up fast.” Strangers would approach us in the grocery store and advise us: “Today she’s in diapers, tomorrow you’re walking her down the aisle.”

Savvy Stories I took it to heart, and decided to make a conscious effort to appreciate all the things that people complain about: diapers, lack of sleep, interrupted dinners – you name it. I constantly posted about it on Facebook and cracked my friends up, until one of them said, “This is really funny stuff. You should write a book.”

Then it occurred to me. I already had written a book, hadn’t I? Weren’t all the funny posts really an accumulation of all the in-the-moment funny things that happen between new parents and their kids?

And people seemed to like them…

I had always been a writer, of sorts. I wrote cartoons as a kid, created a newspaper at my grade school, was co-editor of my high school newspaper… I always had a desire to tell unique stories in an amusing way. Finally, my smart Alec sense of humor would find a productive outlet.

I wrote the book “Savvy Stories” to talk about that first year or so of having a new baby in the house, but also to tell a deeper story, of life challenges and of faith. Our baby daughter was diagnosed with a potentially life threatening heart condition called Long QT Syndrome (LQTS) when she was about 24 hours old.

We had only known her for one day…

Talk about a shock. Here we were, getting ready to lead a parade to our house to shout the joyous news from the tree tops about the arrival of our new baby, and we were told she might die at any moment, and without any warning.

Nothing you do in life will prepare you for a moment like that, and I pray that none of you ever have to go through it or anything like it. We went from jubilant to terrified, almost instantly.

We spent a week in the hospital’s Neonatal Intensive Care Unit (NICU), not sleeping, and doing a lot of praying. Friends wanted to help, but there was nothing for them to do but pray along with us. And pray they did. We ended up with a network of over 10,000 people all over the world following along with our daughter’s struggle for life, watching it unfold in real time because I posted about it on Facebook.

Why would I do that? Not for attention! My friends were all having so much fun teasing me about becoming a father at such an “old” age, they were all tuned in to hear the news of the birth. When that good news was immediately followed by the diagnosis of a potentially fatal heart condition, they were already along for the ride and couldn’t tune out. They were emotionally committed.

And God bless them for that, because nothing will lift your spirits like hundreds of people greeting you every morning, and telling you that they held a special mass for you in their church in Cincinnati, or that they had the choir sing a prayer for you in a church in Germany, or that they are all praying for the safety of your daughter every night.

As time went by, we took our baby home and started doing all the things that normal parents do when they have a new baby in the house: change diapers, turn into zombies from lack of sleep… but we got to go see pediatric cardiologists, too. And those amazing specialists eventually helped me learn enough about Long QT Syndrome that I created several websites to help others who were diagnosed. It is a condition that affects about 1 in 2000 people, but it is often misdiagnosed as epilepsy, and many times the first symptom is death.

You know those stories you’ve read about a healthy young athlete that suddenly drops dead? Some of those are due to Long QT Syndrome. But nobody knew.

After a year or so, we came to understand that our particular form of LQTS would likely manifest itself at certain hormonal stages in our daughter’s life, like puberty, post partum, and peri-menopause. We were lucky, if you can call it that, because a simple beta blocker on a daily basis is all my daughter needs to have the likelihood of living a long, happy life. There are certain drugs she needs to stay away from, and some activities to be careful about, but right now she’s allowed to do anything that any other kid can do.

And that is a big deal. People with other forms of LQTS are not so lucky.

Long QT Syndrome is a not-well-known and potentially fatal heart condition. Simply put, it is a defect in the heart’s electrical system. Each time your heart beats, it first receives an electrical impulse telling it to do so, measured in milliseconds. In people with Long QT Syndrome, that impulse can take too long – and therefore the name: Long QT Syndrome, as in the heartbeat’s QT measurement, and that delayed impulse can cause them to pass out (syncope) or even die. Some Cuties pass out while swimming or running; some have issues with waking up in the morning. Others are “asymptomatic” and will go their whole lives and never have a problem.

Unfortunately for many people with LQTS that don’t know they have it, the first symptom is death. So even though we hate having this condition, we are fortunate to know we have it and to be able to protect ourselves. We are the lucky ones. And I say “we” because it’s typically genetic. I passed this on to my daughter. But so far, we are both asymptomatic, and all my life I did the things that could have triggered a cardiac event: running, swimming, etc., because I didn’t know – and I have never had a problem. Hopefully, neither will she, but since we know, we take precautions. She sees a pediatric cardiologist twice a year, and she takes beta blockers. In the future she’ll have to avoid adrenaline-inducing stressful situations like playing really exhaustive competitive sports at a high level. But we’ll be consulting with her doctors about that.  Some Cuties have competed in the Olympics! Right now, though, she does anything that any other kid her age does.

So we thank God and try to embrace every day as best we can. Through social media and our websites, we know people all around the world who have LQTS and we consider them friends. Life is very typical for us, just like any other parent of a small child. One such friend noted that she tries to remember her kids have a heart condition when she is yelling at them – right! They are normal kids doing normal things, not glass dolls to be put on a shelf!

As I met these amazing people from all over the world, I decided that we needed to tell their stories. The Long Cutie, (a kind of play on words when you say “Long QT Syndrome” out loud), is a book that tells their inspiring, life affirming stories, as well as charming and humorous vignettes about of my daughter at age two.

Long Cutie It was a difficult book to write, and it will tug at your heart, but you will laugh as often as you cry, because it is a very funny book! These are not sob stories; nobody wants your pity here. These are stories that could be about any challenge in life, and how we all need to struggle to meet those challenges. And we all have them, physical or otherwise. Some people will get cancer and some will have broken homes, and some will have drug problems. How we get through our challenges is what defines us. And meanwhile, my kid keeps trying to see how many toys will fit in the dog’s water dish, and whether she can groom the cat with her toothbrush.

Life doesn’t wait while you deal with your challenge. In fact, it goes by quickly, but you don’t notice that when you’re in your twenties. Then one day you look around and your kid is in school, and then graduating college, then married…

Or, as they say, “they grow up fast.”

 

 

About the Author

Dan Alatorre author picBestselling author Dan Alatorre was born in Ohio, and graduated from the University of South Florida in Tampa, Florida (Go Bulls!), before earning an MBA from Tampa College. Dan, Michele and Savvy live in the Tampa area with their dog and cat, and an occasional armadillo (“but we’re working on that”).

Dan can be contacted through Facebook https://www.facebook.com/SavvyStoriesByDanAlatorre

and “Savvy Stories by Dan Alatorre” on Twitter https://twitter.com/savvystories

LinkedIn http://www.linkedin.com/pub/dan-alatorre/9/a98/a95/

and his Blog http://savvystories.wordpress.com/

If this guest blog post had touched you in any way, please consider a donation to SADS at www.SADS.org

 

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About Author Amy McGuire

Author of The Heart's Discovery, a YA Romance novel set mostly in British Columbia with a brief foray into Quito, Ecuador. Also the mother of a bubbly second grade redhead who adores turquoise, and wife to a very patient man. She lives in Toronto, the inspiration for so many of her place names and characters.
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11 Responses to Guest Post by Dan Alatorre

  1. savvystories says:

    Amy, thank you for making me look so knowledgeable! I enjoyed doing this with you.

  2. Pingback: Guest Post by Dan Alatorre | savvy stories

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  4. Stephanie says:

    Amy – Thanks for blogging about LQTS and the interview with Dan on here. I have LQTS and so does my youngest daughter, I appreciate any and all chances to let others know about this condition – knowledge is power.

  5. Michaela Gagne Hetzler says:

    Great post, Dan! As a sister “Cutie” and 14 years into diagnosis, you did a great job explaining our condition and struggles! Inspirational as always!!

  6. Becky says:

    It’s great to see people trying to raise awareness. My 12 year old son has LQTS3. We are still waiting on the rest of our genetics. I’m on a mission to educate people. Thank you, to both of you.

  7. Becky says:

    Thank you for sharing your blog with Dan. I have two daughters with LQTS2…the oldest symptomatic (with an ICD) the youngest, like Savvy, asymptomatic being treated w/ a beta blocker. They both have and continue to play competitive sports and are very active. We are very blessed to have had a “warning” with my oldest daughters first “episode” and happy to say she is very healthy. She just had her ICD replaced (6 year life) and is living a happy life.

  8. M.Eirin Kemi Solberg says:

    Amy,thank you so much for raising awareness about this heart syndrome 🙂 I’m a lqts symptomatic and so is my 6year old daughter. Like Dan says,it’s a shock to be told about this heart syndrome and life turns upsidedown for some time.. But eventually you learn to live with the risks and everything that goes with it in everyday life. Medications,ICD implementation and risk factors become automatically a part of normal routine so to speak.

    • You’re very welcome. When I found out my friend Dan had a daughter with LQTS and that he was so knowledgeable on the a subject I knew nothing about, it just made sense to have him on my blog. His daughter is very sweet and he’s an amazing man.

  9. Pingback: Author Amy McGuire’s Review of 2014 | Author Amy McGuire's Blog

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