Lisa Brown's son in the pool.

I recently had the privilege of taking my boys on a road trip, along with my mom, to visit with my sister and her family.  She lives a couple of states away from us, so our visits are few and far between. It is always refreshing for my mom and I to spend quality time with her, as well as my boys getting to have fun with their cousins, because let’s face it… they are growing up, and before we know it, they will be grown and off to college.

Going to new places is not always easy for my family. My oldest son, who is now 14 years old, was born with a very rare craniofacial condition called Apert syndrome, which affects the skull bones by prematurely fusing. This leaves no opening, or “soft spot” for the brain to grow. His fingers and toes were also fused together. He has had 13 surgeries to rebuild and remodel his skull and midface bones, as well as separate his fingers and toes. Five of these major surgeries occurred before he was even a year old.  Needless to say, things have been complex for him, as well as our family.

My son is very introverted, and self-conscious about being “noticed.” The older he gets, the more resistant he becomes about going places.  I get it… at the tender age of 14, teenagers start seeking independence, and dragging them out of bed before 10 a.m. in the summer is torturous for them. This is also the age of trying to fit in and feel like you belong.

This was when my “new” worry began a couple years ago, but luckily we had two positive events that helped. First, we attended our very first family retreat with the Children’s Craniofacial Association. They host this event once a year so that other families affected by a craniofacial syndrome can meet, socialize, and connect on a level that allows a sense of freedom and belonging. Even though we may live states (and even countries) apart, we are not alone!

Second, we were able to launch a district-wide Choose Kind campaign the year he began middle school, to help raise awareness for Apert syndrome and craniofacial differences. This definitely eased his mind, and ours too. He came from a campus of two classes per grade level, in which everyone knew him, but he was about to enter into a middle school flooded with all the students from the other schools that didn’t know who he was. A video was made, and other students and staff participated to spread the word to choose to be kind. They also encouraged everyone to read the book “Wonder” by R.J. Palacio. If you haven’t read this book, I highly recommend it. Read it for yourself, or to your children or grandchildren — I hear they will be making a movie soon!

The Choose Kind campaign helped ease my son’s mind. In his words, “Now everyone knows, and I don’t have to worry about it anymore.”

Now, let me preface this next part by saying that we as a family have always gone places and done things like most families do: shop, eat out, go to baseball games, arcades, movies, etc. So when we were staying at my sister’s house, we decided to take the kids to their community recreational center that had indoor water slides, a lazy river and such. My boys have been there before with their cousins when they were much younger, and thoroughly enjoyed it. But the minute we arrived and got out of the car, my oldest son started saying to me, “I don’t want to swim, why are you making me swim?”

I have to be honest; I immediately began to feel irritated. It’s quite a struggle competing with technology time these days with a teenager. But what I wanted to ask him was – why was he being difficult? It’s not like we’ve never been swimming in public, or at water parks. I was perplexed, because two weeks prior he had overcome some fears and made the decision to go to church camp for the first time, away from home. He was surrounded by people from our church whom he felt safe with and trusted, along with his little brother, he chose to take the leap.

I stayed outwardly calm, and explained to him that we were here to spend time with our family and for him to enjoy this time with his cousins because we don’t get to see them very often. Besides, he loves to swim and ride on water slides. We went inside, paid for the entrance fee and walked to the pool area. My mom, sister and I were looking for a spot to sit so we could visit while the kids had fun.

We found some chairs and were about to sit down when my son said something to me.  It was kind of loud; everything was echoing, and he is very soft-spoken.  So I asked him to repeat what he said, and these words rang loud and clear despite the fact that I could still barely hear him. “A group of people have already stared at me.”

We had been there less than ten minutes, and those words in my ear punched me right in the gut. I was beginning to pick up his message. He was uncomfortable because we were in another state where he worried that people weren’t familiar with kids that look like him. I guess I was naive to think that we could be past this, and that everyone in the world would be able to look past his physical differences and move on.  But we’re not.  He’s not.  

We are so used to going places and doing things locally. I truly forget that being in a completely new environment, surrounded by people who may not have ever seen anyone like him before, can sometimes trigger his anxiety and feelings of fear. I had to pause for a moment and collect my thoughts on what to say. But the truth is, I don’t always know the right thing to say.

I don’t want to dismiss his feelings by minimizing the situation, but I do want to find just the right way to build his confidence. So I try my best to validate his feelings, yet still give him some truth, encouragement, and hopefully a sense of empowerment. My words to him were: “I am sorry that people have stared at you; that must make you feel uncomfortable. Remember, sometimes people look, but don’t stare, simply because they are curious. They may be wondering what happened, since your fingers and toes look different. But if they continue and it becomes an unkind stare, you can always smile at them or say hi.”

I knew with him being such an introvert, that might be a little unrealistic, but it was the most forgiving thing I could come up with… until my passion rose. My empathetic heart felt sad and a little angry, knowing my son has to deal with this on a daily basis. So I ended it with: “This is a moment where you can make a choice – to be brave, and hold your chin up high knowing that you are loved and that God made you just the way you are. Do the things that make you happy and don’t let fear control you.  Or – miss out on the fun and joyous things in life because you are too afraid.”

I am so proud to say that he chose to be brave, just like he has for the last 14 years.  And when I saw the smile on his face as he floated past us going down the lazy river, my heart could rest again.

Even though this is something he will have to conquer time after time for the rest of his life, I hope that now the seed is planted. The seed that will help him to grow stronger in who he is, and want to bloom even if there are weeds around him.

But this lesson was not just for my son. It was also for me.

Fear will not be our dictator.

Follow this journey at One Real Hero.

RELATED VIDEOS


The first two weeks after Sarah’s birth, I was swimming in a sea of denial. It was so deep, however, I denied my denial. Every morning I would wake up and wonder, “Maybe this has all been just a bad dream.”

I prayed she would be healed of Apert syndrome. I asked our lives would resume to a steady, predictable rhythm rather than the chaos and uncertainty that often accompanied it. For a time, it seemed maybe Sarah would just need a few surgeries, and then we could start a “normal” life — a typical life devoid of surgeries, pre- and post-op appointments, paperwork, phone calls, more paperwork, bills and therapy sessions.

Then one day, it hit me that Apert syndrome was here to stay. No, it wasn’t a flash of the proverbial lightning bolt that jolted me into this reality. Instead, it was like a quiet acceptance settled upon my heart, and at last, I was OK with the fact that Apert was going to be a lifelong companion.

Jeannie's daughter smiling in their yard
Jeannie’s daughter.

I was sitting in the waiting room while Sarah was in her weekly occupational therapy session. Lost in my thoughts, it occurred to me that I no longer viewed Apert syndrome as an unwelcome intruder. I didn’t immediately think, “Apert” when I saw my own daughter or others like her. Instead, I was beginning to see the person behind the diagnosis, the beloved face of my daughter. It was a revelation that swept me into an oasis of relief, and peace settled upon my soul.

Life with Apert syndrome isn’t so unnerving or daunting when one can allow it to be the constant presence of a friend. I won’t say Apert is the kind of friend I’d choose, but since it arrived in our lives and is here to stay, I’m learning to see it as more of a comrade than enemy.

Jeannie's daughter by the water
Jeannie’s daughter.

It’s really a matter of perspective, as is anything that is difficult or uncertain in life. We can choose to view challenges as obstacles, or we can learn to see them as opportunities. 

Sarah isn’t aware she is “different”; she only sees opportunities. Sarah doesn’t know she has Apert syndrome yet. Everything she’s experienced in her little life of three years has been typical to her. She doesn’t know what it feels like to have fingers that move with ease. She has no basis of comparison for her shorter arms or cute little fused toes.

Her body has become her haven, and I’ve learned to see it that way too.

I think we all have to remember that every human being is in some way, different. When I was a kid, I was called “four eyes” because of my coke-bottle glasses. I then earned the nickname “brace face” when I adorned those lovely metal braces on my teeth. I grew up hating the fact I was seen as an anomaly among my peers because of my introversion and “ugly duckling” appearance, but now that I have a daughter who is visibly different, I am proud of the little girl I once was — who was shy, awkward, afraid of herself.

Living with Apert syndrome as a friend, rather than foe, means I see myself differently. I am no longer ashamed of being different, because I know how beautiful each person’s gifts are to the world. One person may be prodigious at empathy, while another is perceptive mathematically. One may be a musical phenomenon, while another has a brilliant engineer’s mind.

Even mundane tasks, such as sweeping floors or organizing shelves, can be done with incredible joy, contentment and finesse. Apert syndrome has taught me there is no such thing as superior or inferior when it comes to people. There are no menial jobs or talents, because even small things can be done with great love.

That’s what living with Apert syndrome reminds me each day – that love is the essence of this life. Perhaps Apert has become more of a family member than a friend lately, because I’ve moved from accepting it to thanking it for what it has taught me and what lessons it has to offer the world, too.


Apert syndrome isn’t pretty to most people. The “ugliness,” of course, isn’t about physical appearances – not to me, anyway – but rather, it’s the “ugly” things people say or do, or maybe don’t say or don’t do. It’s ugly because it’s messy. There are no clear delineations of prognosis or even progress at times, and the myriad of surgeries and post-operative care can wreak havoc on anyone.

What’s toughest, though, is when people don’t acknowledge my daughter, Sarah.  My daughter is one of the most extroverted people around. She’s always walking up to total strangers, offering her signature grin and cheerfully greeting them with, “Hi!” Most people are at least polite and return the salutation, but many then start to walk away. Sarah doesn’t let people off the hook that easily, though. She’ll follow them (and I after her), asking questions like, “Whatcha doin’?” or “What’s that?”

When people scurry away and ignore her, that breaks my heart – no, it shatters my heart into a million fragments. She doesn’t understand their response, but I do, because I used to be one of them. I used to fear people who looked different, because I didn’t know who they were, what to talk about, how to look at them, or even what to say at all.

The truth for all of us is that we fear what we don’t understand. 

I think that’s why it’s so hard to talk about Apert syndrome with strangers or acquaintances, and on the rare occasion, even close family members or friends. It’s because the questions themselves seem to be enshrouded with fear.

What will happen to him/her?

How do you handle ‘XYZ’?

What if…?

We then trail into our own territory of terror, because we don’t know. We don’t have all the answers. There are aspects of Apert so nebulous, statistics don’t even exist to demonstrate patterns or predict outcomes.

So, we allow people to walk away without the impact of knowing just a little bit more than they did before they met our son or daughter.

It’s hard to talk about the fear of death, because it’s always a looming possibility.  Oh, I realize we all die, and there’s no way to know when or how any of us will leave Earth. But with Apert, it can happen any time. Most of us are fairly tight-knit in the Apert community, so we always hear when an Apert kiddo passes away. And it terrifies us to the core. We think, “That could be my child. It might be one day.”

But most of the time, we file those “ugly” thoughts to the back of our minds, because we’ve had just about enough of ugliness in our lives – the words and stares, the brutal surgeries that leave bruises and scars on our precious children, and the glaring message from society that our kids are different.

So the fear of how others might react if we actually verbalized to them, “I’m scared my child might die unexpectedly” is an unfortunate reality. We don’t pretend everything’s OK all the time necessarily, but we certainly aren’t always ready to be emotionally transparent to someone who may rip open our hearts again and again.

It’s because we live with a bleeding – or at least bruised – heart to begin with. It’s a jarring vulnerability, reminding us no matter how typical we may secretly (or openly) wish our life would be, Apert syndrome is the ever-present, prevailing mystery and unwelcome visitor.

So we live with the visitor, and it becomes our companion in an odd way. But it doesn’t negate our fears – or the fears of passersby. I think anything that’s hard to talk about is related to our innate longing for acceptance and happiness, which aren’t guaranteed when ongoing challenges are present.

Regardless of who we are or what we fear, we must start the conversations, however difficult they may be. We must answer the questions, regardless of how uncomfortable they are. And we must learn to be content with the questions themselves, not always grasping in desperation for answers that may never arrive.

Yes, Apert syndrome can be a mystery, but it can also be an adventure. My sweet Sarah is proof of this. I cannot imagine the world without Sarah, or people like her.  The world needs different, because — as we all know well in the Apert community – different isn’t ugly. It’s beauty in disguise.


Maybe you’ve known about Apert syndrome for a while and have been slowly preparing yourself for your child’s arrival. Perhaps it was unknown to you prenatally, and you were completely taken aback when your child was born with the features of Apert: mitten hands, fused toes and a misshapen head. Either way, life has been forever changed now that your son or daughter has officially received the diagnosis, and you need that lighthouse as your beacon right now.

First of all, breathe. It really is going to be OK.

little girl with apert syndrome

That’s not just a worn platitude I’m saying to calm your nerves. It’s the truth. Having a child with Apert syndrome isn’t easy, but the journey gets better because you change.  Your attitude changes. Your perception changes. Everything about Apert will shift from a burden to a blessing. And, at some point down the road, you will see your child rather than the diagnosis. That alone is cause for your joy, and when it happens, you won’t know it right away.

But when you look back on your journey, you will smile to yourself and tell another new Apert mom or dad, “Hey, someday it’s going to be OK.”

That being said, you need to know that you aren’t alone. The Apert family is ready and eager to welcome you into its fold.  Trust me, I know, because everyone I’ve been privileged to meet in this community has become my family at the heart level. In many ways, they will be more family to you than your blood relatives, not because your relatives don’t genuinely care about what you are going through, but because they can’t possibly understand what it’s like. But your Apert family does. They are moms and dads, kids and grandkids, adults and seniors. They are friends and mentors, counselors and nurses, healers and advocates. 

You will need them. Cling to your Apert family. Start as soon as your child is born, or shortly thereafter. Oh, I realize it seems to be the worst possible time to make these connections, but they will be your lifeline when, out of nowhere, you feel suffocated and confused, angry or overwhelmed.  Your Apert family is there to listen, share, offer prayers and advice (but only when solicited), and they will rally with you. They’ve been there. Grasp their strength when yours is depleted. Find in them the courage and encouragement you need to keep moving forward – for your sake and the sake of your child – because there will be days when you have none.

And on those days when life seems to be wasting away and you have no idea how you will make it through, do not give up hope.  It seems flimsy and clichéd to say such a thing, but believe me, I have been there.  I have been in the pits of darkness with this disease, because it is so mysterious, but hope is what I cling to when all else fades away into oblivion. Hope will be your reason, your breath, your focus. Keep it at the forefront, and you will be able and willing to confront whatever may come – good or bad.

And the bad will come.  Don’t dwell on it, but expect it.  Allow it to be in the back of your mind, because it’s a reality. But when the bad arrives, remember that “this, too, shall pass” and “all will be well, and all manner of things shall be well.” These are not meaningless words. They are truth, and they will guide you through the murky waters of caregiving. 

The bad days or weeks or months will remind you of the goodness that still exists, somewhere, in the midst of the struggle, and then you wait for the good to return to you.

The good times will not last, either, so don’t ride on the hope that “this time, things will be different,” because they won’t. Wait until another surgery hits, and you will find yourself near despair if you live according to the fallacy that goodness lasts, too.  The key to acquiring peace in the throes of Apert syndrome isn’t so much in riding the wave of good or bad days and months, but it is in living in the present moment and finding even small blessings in each day. 

little girls with apert syndrome

Your child is a blessing and a gift to the world.  Do not allow the world to tell you otherwise. There will be people who pity you, but don’t allow yourself to become a victim. There are enough victims in the world to fill it. What you must choose is victory, knowing it will not be achieved without struggle and pain. But your child is far from the burden others believe s/he is. Remember that. Relish in his/her laugh. Enjoy the moments you share together in unbridled joy. They may be few or many, but they are treasures and will contribute to expanding your heart far beyond imagination.

Finally, remember life is a journey. No one else can live it for you, nor can you live someone else’s. We are not meant to judge and be judged, but it still happens. Be OK with that. Be aware of who you are – warts and all – but without labeling yourself or anyone else, especially your child.  Labels destroy. Your journey and your child’s journey are meant to be lived to the fullest – tragedies and triumphs together. If you live well, you will learn to love well along the way. And that is what matters above all else.

Find out more about Apert syndrome support by visiting these online communities:
Apert Syndrome Awareness,  Apert International (Apert USA), Apert.org.

June is Apert Syndrome Awareness Month. Spread the word and get educated to #choosekind! 

The Mighty is asking the following: Write a letter to yourself on the day of the diagnosis. Check out our Submit a Story page for more about our submission guidelines.


Apert syndrome. Not many people know what it is, and no one would expect 7-year-olds to figure it out on the spot, either. No one seemed to understand how a child could be born to look so remarkably different than the rest — not even the one the disorder is affecting.

The closest definition a 7-year-old with Apert syndrome would be able to come up with is it’s something that causes the kids around her to shy away from her. It’s something that gives grief and loneliness and makes her feel as if she has to sit by herself at a lunch table because she feels too awkward and nervous to approach anyone because of how they react to her. It’s something that makes her constantly ask herself, “Why me?”

This is for the 7-year-old me. This is for the girl who spends all her recesses on the playground, walking around by herself because everyone else has drifted off into groups and wouldn’t invite you to play with them. Be patient. You’ll soon surround yourself with a bunch of friends, ones who will love you unconditionally no matter what, and they will be there for you through every obstacle you come across. They will never leave just because you look a bit different from them and had to have many trips to the hospital for surgeries.

I speak to the girl who was often scolded by her mother for not being on the same level of maturity as the rest of her peers (as mature as grade school children can be, at least). You’re going to grow and carry a specific type of wisdom not many people will be able to see with anyone else. It’s the wisdom to judge people on their character, whether they have a beautiful personality more than a beautiful appearance. It’s the wisdom to always hold out a hand to someone in need, no matter where they come from, how they look and how they live. Before you know it, you’ll be right there with your peers, proving your maturity.

vivi zhang

I speak to the girl who grew up living a life of struggles, doubt and judgment. Who didn’t think she would go far in life because no one properly welcomed how she looked compared to the others around her. Don’t give up. Because one day, you will find happiness. One day, you will find confidence just being yourself no matter what society thinks of your Apert syndrome. One day, you’ll find yourself surrounded with friends who will love you the way you are no matter how you look or what you do.

Don’t give up. 

One day you won’t be the lonely girl on the playground.

The Mighty is asking the following: Write a letter to yourself on the day of the diagnosis. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.


Apert syndrome is a rare congenital syndrome that causes unusual development in the skull, face, hands and feet. It affects about an estimated one in 65,000 to 88,000 newborns, according to Genetics Home Reference, and the most notable physical features include webbed hands and toes, bulging eyes, an underdeveloped upper jaw and a sunken mid-face.

That’s the dictionary definition. Go on WebMD, eMedicine, MedlinePlus or any dictionary, and you can find a variation of the description. But for me, it goes deeper than that.

For me, Apert syndrome is a grind. It’s wondering why you get asked so many questions about your appearance. It’s wondering why everyone keeps staring and pointing at you as you walk by, doing an awful job at remaining subtle.

For me, it’s feeling like you want to give up. No more hospitals, no more surgeries — my one wish as a child was for someone to make all the pain stop. Cut the IV, cut the aching body parts and cut off the casts and bandages. It’s feeling like all the effort is a waste when the whole world seems to be against you. Why bother trying all the operations if you’re still going to get judged for who you are? It’s feeling like you want to please everyone every day, but they’re still not satisfied with you. It’s feeling like your friends don’t see you as much of a friend and more of a charity case. It’s heartbreak and doubt. It’s questioning your worth.

I’ve lived 20 years with Apert syndrome. I’ve had to grow up a lot quicker than anyone else my age. It’s a privilege and a chore. It’s walking around school, feeling like I could never compare to the pretty girls with perfect faces all the guys chase after. It’s wondering about the friends I do have and questioning what’s going on in their heads. Are they friends with me because they want to or because they feel bad for me?

It’s struggling with school and trying to get my grades up to par. It’s feeling invisible, watching as life passes around you and no one noticing you as much because they don’t have any regard for anyone different from them. It’s breaking down crying because three people I’ve known for a two-month time span are being nice to me, and I’m surprised when they say they actually like me. That’s how much insecurity consumes me.

In my eyes, Apert syndrome also means possibilities. It’s a second chance for transitional periods like going into middle school. It’s creating my own world where I meet friends who love me the way I am and see beyond my face. It’s waking up to the morning sun and having faith it’ll be a good day. It’s having strength to never give up hope, no matter how many bombs life throws at you.

It’s being considered a role model for everyone and getting reminded people are inspired by my journey. It’s being less concerned with how I look and more with how I act. It’s feeling even a bit of sympathy for the people who don’t share the same mentality. It’s becoming the “change you wish to see in the world” and showing my heart more than my body, patiently waiting for everyone else to follow my lead.

Apert syndrome is my call to the world. It’s me letting the world know it can knock me down as many times as it wants. But I haven’t given up yet. And I’m not planning to.

Vivi Zhang.1-001

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.