Joel Saavedra: An Awesome 3-Year-Old Boy Living with Crouzon Syndrome

As a parent, I (Anthony Crosby) genuinely believe I have come to grasp the concept of unconditional love. Take last weekend, for example, when one of my daughters took a bedroom that I had spent a solid hour cleaning and demolished it within seconds. Was I annoyed? You bet I was! However, after my temper subsided, and I realized it wasn’t that big of a deal in the grander scheme of things, I scooped up my little girl and gave her a massive hug! Why? I cherish her for who she is, and no external circumstances can ever change that, not messy bedrooms or anything else. Today’s special guest is very blessed to have parents who see him through that same kind of loving lens!

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This week, we’re joined by one very cool three-year-old, Joel Saavedra! In the short amount of time I was able to spend with Joel, I came to learn a couple of things about him. One, he is a master t-rex impersonator. Two, he has an affection for singing out Johnny Cash songs!

Since birth, Joel has been living with a rare genetic form of craniosynostosis called Crouzon Syndrome. We’ll go into some more details of what this syndrome is shortly, but know that this is something that affects one in every sixty-thousand newborns ( I invited Joel and his mother to meet with me so we could learn more about Crouzon and what life is like living with it.  

I had planned to ask Joel the following questions; however, we met up at the library, and he found some legit toys in the kid’s room. Let’s face it—playing with sweet toys is a lot more interesting than talking with me! Therefore, while Joel gets his play on, we’ll talk with his mother, Jane Saavedra!

Jane, can you please explain to our readers what exactly Crouzon Syndrome is?

“It’s a mutation of one of his genes. It was spontaneous. I don’t have it, and his dad does not have it. It was a fluke. The rest of his body is fine, but the bones in his head didn’t grow correctly. They grew at a third of the speed they’re supposed to, so his anatomy is a lot different. His ear canals, nasal passages, and throat are all smaller than other kids’.”

Thank you, Jane. Now, let’s get to know Joel a little bit. What has been his journey in life so far?

“Joel was born on April 11th, 2016 in Salt Lake City, Utah. I had a great pregnancy; there were no complications at all. However, when my husband saw him for the first time, he looked at him and then told me he had weird eyes. I told him to shut up and that he was beautiful; I had not seen him at that point. When I finally looked at him, I agreed that something was different. We thought it was swelling from birth and that it would go down. It never did. His doctor came and told us that he might have a syndrome, but she didn’t want us to Google it until she investigated. I was naughty, and I Googled “bulging eyes,” and all these scary pictures started popping up. It was devastating because I had never seen anything like that before. When the doctor came back, I asked her if he had Crouzon Syndrome, and she said yes.

“He had his first surgery when he was nine months old. They went up his nose with some balloons and moved his bones around so that he could breathe. He had his first skull operation when he was eleven months. Overall, he’s had nine surgeries and has several more to go through in his lifetime. He has at least nine different specialty doctors, from a plastic surgeon to an orthodontist.

“We moved to Elko because my job in Salt Lake got outsourced, so we lost our insurance. I had my husband apply here, and he got hired on at the mines. Thank goodness for that! We’re lucky to be here! It’s a good place to raise kids.”

What else can you tell us about your son, Jane?

“He’s very silly and has a great personality! The genetic mutation didn’t affect his cognitive abilities, so he’s still pretty smart! He’s starting preschool next week and likes many of the things other kids his age do!”

Jane, I’ll admit, I had never heard of this syndrome before talking with you, and I’m sure this may be the case for many people in the Elko Area. This reality would lead me to assume that not everyone reacts in the most understanding way when they first meet Joel. Is that correct?

“Yes, that’s been hard. Since he’s only three, Joel doesn’t really know that kids are running away from him and calling him names, but I do. When we go back to Salt Lake, I’ve noticed that the kids will look at him, but they won’t normally say anything. In Elko, kids will back away from him or go behind their parents and hide. I took him out of the grocery cart the other day, and another little kid was surprised that he could even walk! I think it’s because they don’t know what Joel has because they’ve never seen it before. Overall, in general, Elko has been really good to us! My husband is from Peru, and even he calls Elko “little heaven.”

What would you say has been a big blessing that has come from sharing your son with the community?

“The biggest blessing is that we’ve gotten to meet many people through all of this because it’s such a good conversation starter! I don’t care if someone asks about Joel; I’m flattered when people do because I can talk about my kid for hours! When it comes to other little kids, they don’t always have a filter; they’ll say he’s weird or creepy. So, we’re able to take those situations and start a conversation with them. If their parents are around as well when something is said, I will stop them both and “kill them with kindness.” It’s taught us a lot, and now my other son (7) knows we don’t say mean things to someone because they look different.”

Is there anything else your family has learned over the last few years with Joel?

“Throughout this process, we have learned the phrase “choose kind,” which comes from the Julia Roberts movie Wonder. In the film, there’s a line that says, “When you’re presented with a choice of being right or being kind, choose kind.” You don’t have to be perfect; just be kind. Joel may look different, but he’s the same as any other kid on the inside.”

September is craniofacial acceptance month! If you would like more information on how you can help spread awareness and positivity for children like Joel, you can visit these sites:

Children’s Craniofacial Foundation

Genetics Home Reference

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See you around, Elko!

Article Credits:

Written by: Anthony Crosby

Edited by: Nadara Merrill

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