Secretariat‘s Nestor Serrano On Daughter’s Cerebral Palsy

10/15/2010 at 09:00 AM ET
Courtesy Nestor Serrano

It was just a coincidence that Secretariat‘s Nestor Serrano was serving on the board of United Cerebral Palsy of New York City. Little did he know that years later, the contacts and friends he’d made would prove more valuable than ever when his own daughter was diagnosed with CP.

“It was devastating,” Serrano says of daughter Amelia‘s diagnosis more than four years ago. “When she was born, we immediately noticed something was wrong — she wasn’t crying, and was really quiet. The doctor said that sometimes happens, and she’d be fine.”

Unconvinced, Serrano joined a nurse as she performed standard tests on Amelia, and noticed she was “floppy.” After she started turning blue, “they told me they had to take her in,” Serrano recalls. “It was tough on that end, then especially tough having to come back and tell my wife that something was off.”

Amelia wasn’t diagnosed with CP until she was 6 months old, after many tests, muscle biopsies and MRIs. About two weeks after that, Serrano stopped at the UCP of NYC golf tournament, and only then realized the organization could help him, too. “When this kind of thing happens to you, you’re all over the place,” he says. “That was the first time it even occurred to me that UCP could be of assistance to us.” Within days, the family was learning everything they needed to know about the disorder.

Serrano says 4½-year-old Amelia can’t swallow, which means she can’t eat, and that her secretions often seep down into her windpipe, which can cause pneumonia. She’s tube-fed, takes medication and twice a day undergoes a series of machine-aided breathing treatments. She also requires a suctioning unit to vacuum secretions from her throat. “My wife Debbie has it down to a science,” Serrano says.

Though the family is used to the daily challenges of CP, Serrano says what’s so heartbreaking is that Amelia is nonverbal and unable to walk. “You can only imagine what it must be like to have a 45-pound child who can’t go where she wants or tell you what she wants,” he shares.

Serrano strives to make Amelia’s life as ‘normal’ as possible, taking her to the beach on a recent weekend — “She’d never been before,” he shares — and exposing her to as many experiences as possible before she gets too big to transport easily. “We’ve got to do what we can while the getting’s good,” Serrano says.

But despite that, the actor says his daughter is full of life — and has even made his family, which includes 22-year-old son Spike, feel more connected. “She’s brought my wife closer to me. I’ve seen sides of my wife I never thought I would see,” he says. “And while no one can love their son more than I love my son, the bond I have with my daughter is unlike anything I’ve ever experienced.”

Courtesy Nestor Serrano

 

— Kate Hogan

FILED UNDER: Exclusive , News , Parenting

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Sandra on

All I can say is God Bless both of you! You seem like the most patient people with this beautiful gift from God! Keep this little girl safe and know that she is loved every single day of her life. What a lucky little lady to have such wonderful people as her parents. Take care of her and yourselves. God Bless.

h on

very brave parents and very brave little girl

Jo on

Thanks for the wonderful story. I am in a wait and see stage with my son at this point. He had a similar birth as your daughter. Thanks for showing us that it is possible to keep a positive attitude.

JMO on

A lovely story and a beautiful little girl.

My nephew has CP. He is on the high funtioning side though. We’re just blessed that he was spared the worst of what could of been.

Ellie on

What a beautiful testimony from a loving father. A friend of mine also went through this journey with a child who was diagnosed with CP. I’ve been a fan of Nestor’s since his appearance on “ER” when he portrayed the CDC doctor. I’m an even bigger fan now. God bless your family, Nestor!

Brenda on

What a great story! I totally get what they’re saying my little sister had a heart surgery back in 2006 in which it left her with cerebral palsy because of medical malpractice and we had to learn how to feed her through a tube. The doctors said she wasn’t going to make it through the night after her surgery but God is good and he let us have her for 5 more months. She passed away mother’s day of 2007

Sara on

What a beautiful story and an even more beautiful little girl! God bless them for sharing this! :o)

Michelle on

thank you for sharing this beautiful story and pictures of this beautiful family. God bless them!

Jodi Cutler on

Debbie writes an inspirational blog, please pass it along to the families who may benefit from her valuable resources. Check it out here: http://amazing-amelia.blogspot.com
Love to you, Nestor, Spike and Amazing Amelia…
Jodi

Beth on

I’m 24 & have CP myself. (Although I am very lucky to have a mild case.) My mother went through a similar process of taking me to several doctors before I was diagnosed. I’m grateful that Nestor & his family are speaking about it & care so much for their girl. Thanks for sharing this story!

Rach on

How cute is their family ! I wish we heard more about these kinds of celebrity families rather than what kind of outfit some kid is wearing. These stories are so beautiful, sad and uplifting all in the same post. I still tear up when my son hurts himself and he will be 2 soon, so I can imagine the hardships this family has faced and overcome. Good luck to all of them and god bless ! Nestor is such a great underrated actor, i always enjoy his performance, whether its something smaller like a tv show or a movie, he is awesome !

aj on

What a beautiful, beautiful girl. God bless the family and thanks for speaking out on CP!!

Marla on

Amelia, you are beautiful, perfectly and wonderfully made. I love that this article was posted here. Her parents are lucky to have her and vice versa.

As the mother of a special needs child, the journey is so challenging and bittersweet, but I wouldn’t change it.

meghan on

Yep, I’m crying now. How beautiful. I agree with you, Rach. As much as I enjoy the frivilous posts, I value posts like this more. Between Nestor and Mark McGrath’s piece about his father, I’m incredibly choked up this week!

ecl on

This is a very moving story about the unconditional love of a family, but I wouldn’t call it a “great” story. It is heartbreaking. As her father says, she will never walk and talk and play, etc. and he has to watch her struggle every day. To say, as a previous poster did, that she is perfectly made and you shouldn’t wish to change a thing, is, I assume, a coping strategy. But certainly I would wish a full life on this little girl.

CelebBabyLover on

This post really tugs at my heart-strings. When I was in High School, a classmate of mine, whom I also considered my friend (even though she was nonverbal), that not pretty much the same type of severe CP (I have a minor disability myself, so we were in our school’s special education class together, although I took several regular classes as well) that Amelia is described as having.

She was tube-fed (she could swallow, though. The tube-feeding was for other reasons, including the fact that there was too much of a risk that she might aspirate food that she ate orally, causing pneumonia.), had breathing difficulties (like Amelia, she sometimes had to have her secretions suctioned from her throat with a vaccuum suctioning device), and couldn’t walk or talk.

Sadly, her breathing difficulties ended up taking her life when she was only 23. I pray that Nestor and Debbie will be blessed with many happy years with Amelia! Bravo to you guys for speaking out! 🙂

FC on

I’m feeling a little misty-eyed right now, but I do enjoy reading this. I can just feel how much he’s devoted to his family, and a devoted man, even with a trying situation like theirs, is a beautiful thing.

Marla on

Ecl, it is not a coping strategy. It is the way we view our world, which is a perspective that is better than the one I had prior to having our son. It was life changing.

To imply that she should be different (which is not what I am saying you are doing), that if she walked, talked, etc, that only then would it be “ok,” that she would be valued more, that her life is only then acceptable, implies that something is “wrong” with her. That is not the case. Yes, she has significant challenges, as does her family. But I invite everyone to open their eyes to accept the differences in the children of those around them. They all come with different abilities. Just because a child is disabled, differently abled, or whatever you want to call it, doesn’t mean his or her parents are in need of pity or of sympathy, just an attempt at understanding and certainly, acceptance of our children.

My child CAN walk, talk, etc., but he is not what would be called “normal.” But we were told that when I was pregnant with him, that he would probably never do any of it. Yet, he did.

I am not in a la la land or rainbows and unicorns. It is hard. But am I better person because of it? Absoutely. Would I change the person my son is or the mother am I because of him? No. Do I wish he had an easier time? Yes. MOstly that is because the most significant pain I feel comes from the comments/stares of others. He is so very blissfully happy, not aware that others see something else. That is the blessing in all of this for him. He probably won’t get it that other kids and adults think there’s something wrong.

And no mother wants to see her child struggle, right? My typically developing boys struggle too. And that pains me as well. But it is a part of life, no?

Again, thanks for the article. It is an honest look into someone else’s life that is not about the fluff usually seen here.

Carey Ann on

What a great story!!! I was told to plan my son’s funeral when I was in a serious traffic accident when I was 25 weeks pregnant. We were blessed with a child who knows no boundaries even though he has cerebral palsy. Not every parent can handle this with as much grace and ease as these two. Yes, the range of emotions is very overwhelming. You want to blame yourself, you want to blame anything, you want to hope that there is a way to “fix” it… Kudos to this family for taking charge!!!

Kevin Wiggin on

Good luck to you and your family. I have noticed you in TV shows, but you really came alive in Secretariat, in my opinion. You played your role with excellence. I hope to see more of you in movies as soon as you can. Take care of that precious little girl in your life. You are a fine man.