What Apert Syndrome Means to Me

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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

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5 Important Things I've Learned From Having Apert Syndrome

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Twenty years ago, my mom’s midwife said the four words that made hours of agonizing labor pains worthwhile.

“You have a girl!”

Little did my family know my arrival was not the only present I had to offer.

“Curious… your daughter has Apert syndrome.”

Since that day, I’ve lived through two decades and braved 16 surgeries. I’ve also seen enough to know having Apert syndrome doesn’t mean having a bad life. Here’s what I’ve learned so far:

1. It’s OK to have help. Growing up, I knew more adults than kids my own age because I was always surrounded by therapists and special education teachers who had a responsibility to work with me. They gave me comfort and opened my eyes to the reality that it’s not stupid to ask for help. You don’t always have to try to figure out the puzzles of life alone. Sometimes all it takes is a guiding hand to get on course.

2. Naivety is dangerous, especially when it comes to choosing your friendships. Let’s face it — kids of any age can be judgmental and are sticklers for normalcy. For a kid with Apert syndrome, a case of the insecurities could appear far earlier than it might for typically developing children. My family thought I was blind, deaf and oblivious to the stares and awkward inquiries about my appearance, but I knew there had to be a reason why I wasn’t making friends, and why the friends I did have treated me as more of a tag along than an equal. When you’re different from what society expects, it’s important to choose your friends wisely — friends who will love you the way you are no matter how you look.

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3. You can be beautiful if you want to be. So I’m not the blonde all the cool guys chase after, and I don’t wear Victoria’s Secret and splatter my face with makeup. Sometimes, I get comments that I dress like a boy (mostly from my mom). But I know I’m beautiful because I’m more than just my looks. I know I’m beautiful because I don’t care to impress anyone. Every day I wake up to the same routine of just being me. And that’s when I’m happiest because there’s no other great feeling than just being yourself.

4. It’s not my fault. I was only 3 months old when I first had doctors prodding and poking at me. Growing up, I’d be sitting in the occupancy room, and even when I’d have cartoon videos playing on the TV to cheer me up, there’s a part of me that asks myself, “Why me?” The more I grew, the more I realized I have no control over this. It’s not my fault. I was born with this. I didn’t do anything wrong and I didn’t go against anyone. The doctors aren’t trying to hurt me, they’re just doing the kindest thing for me and making sure I would get the best treatment and medical attention. I never and would never have the power strong enough to control it. No one is at fault for something they can’t control. I am not the villain even if society wants to disparage me just for being different.

5. Just because you’re different does not mean you’re worthless. Like almost everyone in this world, I’ve come across people who are different and don’t adhere to what society deems “normal.” We’re different from each other, but at the same time, we all have one thing in common: at one point in our lives, we might’ve been under the notion that we don’t belong in the world because the world doesn’t always show tolerance for us. But within that world, I’ve found my own world. I found support and friendship and love from friends who are understanding and don’t care how I look or how many surgeries I’ve had. They saw my worth. If I can feel that way, anyone else can, too. So what if you look and act different from the rest of the population? Look around you and find your own world where there are people who believe you matter and who love you unconditionally. Then, you’ll feel like you’re worth it. Everyone is worth it.

So if you’re one of those rare humans who was born with Apert syndrome, don’t worry. You have the voice to make a difference and prove it’s OK to rebel against stereotypes. Apert syndrome is a blessing, not a curse, and you are a miracle.

Vivi

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5 Ways I've Changed Since Becoming a Special Needs Mom

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I wrestled intensely with my daughter Sarah’s diagnosis after she was born. My prayers were initially desperate bargaining, such as, “Please heal her,” or “Please take away her syndrome.” It wasn’t that I didn’t love Sarah. I just didn’t want her to have a difficult life, and more selfishly, I didn’t want to have a difficult life.

Sarah recently turned 2. As she has grown into “toddlerhood” her unique personality shines more and more brilliantly. And I have come to realize my prayers have changed. I no longer ask that she will be normal or typical because I cannot imagine Sarah to be anyone other than herself.

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While her syndrome does not define her, it has become a part of her. I now thank God for the gift of Sarah — Apert Syndrome and all.

What’s more, I was recently humbled by the admission that I have changed because of Sarah.

These five points are not an exhaustive list but only the beginning of how I’ve noticed I am different and changed.

1. Patience. Anyone who even remotely knows me as an acquaintance, let alone my closest family members and friends, will readily acknowledge I have a short fuse. I’ve never been a particularly patient individual, and I can’t say I ever really wanted to be. But due to Sarah’s unique development, I have developed a sense of waiting without restlessness. There’s an inner calm that resides in me as we venture into new territory with evaluations, specialist appointments, fittings for orthotics and pressure garments, new surgeries, diagnostic tests, etc.

Patience has flowered in my heart since I’ve had Sarah. She has shown me to be angry and in such a hurry all the time is counterproductive.

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2. Simplicity. An increased reservoir of patience has definitely led me to a deeper appreciation of simple moments and blessings. Because our family doesn’t fit into the typical mold, we do not savor the same types of luxuries most American families do — annual vacations, leisurely weekends or exquisite material possessions.

Instead, we’re enriched by a 10 minute walk to the local park where we watch our girls swing gleefully and run around together for unbridled moments of pure childhood play. These are the moments, seemingly minuscule and definitely fleeting, that enrich my life. I covet them because they happen so seldom. Yet if I’m careful, I recognize the small gifts each day presents to me — a short note from a friend, a hearty and healthy meal and laughter shared with my family. I have been given all I need right here, right now.

3. Generosity. Here’s another virtue I sorely lack by nature. I’m the only girl in my family of origin, so I never had to share much of anything — my clothes, a bedroom, my toys, even my time. Over time, I grew to be an egocentric young lady who matter-of-factly wanted to do whatever I felt like.

Sarah’s presence in our family has expanded my heart so I think of my children and what they truly need from me (not want). Generosity means I am more capable of letting go of my time and to-do list in lieu of playful spontaneity with my daughters.

Generosity also means I am willing to extend myself not just to my family, but also to others when they are in crisis or dire need of assistance and support. A generous heart, I have learned, is an open and magnanimous heart.

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4. Sacrifice. Along with selfishness, I have never been keen on offering up my personal comforts in order to assuage someone else’s pain. It’s just difficult for me to do this. But when Sarah was an infant she was so little and helpless in my arms. I knew immediately I could not forsake her needs due to my unwillingness for discomfort, both emotionally and physically.

Sarah has taught me there will be long nights and exhaustive waiting in surgical areas at hospitals, numerous irritating phone calls with the insurance company and even more detailed conversations with specialists, therapists and physicians. Sacrifice entails an intentionality of surrendering one’s physical or emotional comforts for the sake of love. And love, I have found, is not in what I can get from everyone else around me. It’s what I give — and give freely at that.

5. Acceptance. I’m not speaking of tolerance here, but rather a tranquil indifference to whatever the outcome of various medical or social concerns about Sarah. It’s also accepting her mortality, as well as my own, and making the short time all of us have on Earth count.

Acceptance means my ability to say it’s OK if I don’t have all the answers to my questions. It’s entering into the mystery of life knowing there are far more enigmas than there are cut-and-dry solutions in life.

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If I look in retrospect, I’m ashamed at the person I once was. Having two daughters with special needs has opened my eyes and my heart to the suffering of others with far greater afflictions than what our family has to bear. I no longer ask, “Why me?”

Now I see limitless possibilities through the lens of hope.

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The Time a Little Girl’s Remarks About My Daughter Hurt My Heart

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Sometimes I forget that Sarah looks different. Actually, I forgot long ago that Sarah didn’t look like a typical baby or toddler. But this week I was reminded – sadly – in an otherwise normal milieu.

When our family is out in public, I often forget that we aren’t a typical American family. Sarah’s condition is not usually on the forefront of my consciousness anymore – not like it was shortly after her birth, that is. At that time, I was in a much different place in my heart. I was often embarrassed or even ashamed, not wanting anyone to notice her visible differences – her mitten hands, her pronounced forehead or buggy eyes. I eventually made peace with these, and today I am unashamed of how Sarah looks. It doesn’t matter to me anymore. Sarah is just Sarah.

Still, I forget that others who do not know Sarah or who have encountered her for the first time might see her the way the world sees people who are different – a stark contrast to the chameleons we see everywhere else, the people who all blend together rather than stand out.

Clearly, Sarah stands out. But instead of perceiving this as negative, I have come to believe this is a gift. It is good that Sarah is noticeably different, because her little life reminds everyone else that we are all people.

girl in orange shirt sitting next to a pumpkin

At the doctor’s office, I was waiting to be called into yet another exam room. I had both girls with me, and it was an otherwise ordinary day. Another mom and her preschooler walked into the waiting room and sat down. The young girl, Emma, immediately introduced herself to Lissie, my other daughter, and asked if she might want to play. Lissie, being shy, needed some coaxing, but she did eventually engage in some passive play with Emma.

Emma then looked down at Sarah, who was gleefully scooting on the floor toward the other two girls. Sarah isn’t aware yet that she looks different. She thinks she is just like everyone else, and that is how she is treated at home – just like a typical, normal toddler. But Emma, who had just seen Sarah for the first time, gasped and said, “Mommy, that baby has a funny face!”

Her mom, clearly embarrassed, apologized profusely. I quickly brushed it off with a wave of the hand and said, “I understand how young children are. They are just curious, and that doesn’t offend me, believe me.”

Then Emma noticed Sarah’s hands. “Mommy, the baby only has three fingers!” The poor woman looked like she wanted to crawl into a hole. What does one do in this situation? We all know that children do not have social or verbal filters, and they definitely say what they mean. But how do we, as adults and parents, respond in these unforeseen situations?

I smiled. “Yes, she had surgery on her hands to give her fingers.” Emma, of course, didn’t quite grasp all of this, but thankfully her mom asked me for Sarah’s name and then told her daughter, “This is Sarah. Can you say ‘hi’ to her?” Emma did, and suddenly she didn’t treat Sarah as if she were a social pariah anymore.

I think a parent’s response makes all the difference in the world in a circumstance like this. And we all – at some time or another – will find ourselves in these predicaments.

Even though I knew little Emma was so young and had no intentions of being rude, it still hurts my heart as a mama. It hurts, because I know inherently that the world sees Sarah’s craniofacial condition, while I simply see Sarah.

 

 

 

 

To me, she is just a typical little toddler, and the wonder in her eyes as she says, “Hi!” to passersby both pierces and warms my heart.

It pierces my heart because I see the stares in my periphery, hear the murmurings and whispers when we are in public places, but she does not notice them. She looks at the world through untainted, unblemished lenses, yet the world does not respond to her in like manner.

It warms my heart, however, because I am humbled by her transparency and her innocence, two very striking characteristics in an otherwise sterile society.

After this incident occurred, this thought came to my mind: a funny face is a beautiful face. This is how I see Sarah. I do not see a funny face. I see the face that has become so familiar and so beloved to me and to countless others. I see her unique features, yes, but they become less apparent over time. Her face has become one marked with love and joy, not one that was formed asymmetrically.

When I see Sarah, I see her golden, blonde hair streaming down her neck. Yes, it is wily, but I find it to be beautiful. I notice her big, blue-green eyes and long, curly eyelashes. Are her eyes a bit droopy? I suppose, but I don’t really notice anymore. What I see is the beauty from who Sarah is radiating from within to an external beauty that the average person may not view. But I do. I see Sarah’s sweet smile and her button nose. Is her nose small and the bridge a bit scrunched in? Yes, but I don’t care. Is her mouth a bit small, and her teeth crooked? Is her speech slightly slurred? Of course, but it no longer matters to me.

None of this matters to me anymore. I have given up the fight of trying to fit our family into a societal mold that, in actuality, probably doesn’t exist anyway. It exhausts me to be constantly vigilant as to how others are reacting or responding to Sarah’s differences. Though initially I dreamed we would be an otherwise normal American family, I have now come to embrace the beauty and gift of each family member’s unique attributes.

A longer version of this post originally appeared on Love Alone Creates.

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7 Things to Do When Your Kid Points Out Someone’s Differences

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Last year, my husband and I were honored to become godparents for the first time. Our dear friends had just become parents for a seventh time, adopting an African American boy they named Trae.

Trae was born prematurely with a diagnosis of Apert syndrome, a condition in which the child’s skull bones prematurely fuse, causing some of the child’s facial features much more prominent or receded. Additionally, children with Apert syndrome can have fused toes and fingers, are prone to deafness, seizures, and cleft palate, and can develop more slowly than their peers.

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Trae utilizes a special stroller and high chair, each designed to accommodate his physical needs. He receives multiple therapy sessions every week, and he will experience several risky surgeries throughout his early life, including skull surgeries.

Trae is a social little boy whose smile can light up a room. He is 20 months old and has recently mastered saying “dada” and sitting up on his own. He’s learning baby sign language and is teething like a typical toddler.

child with apert syndrome wearing an olaf hat

Despite his many wonderful qualities, the baby garners many stares and rude comments. One of the medical professionals he recently met with remarked how he looked like a “pug.” Some children ask their parents, quite loudly, “What is wrong with that boy?” Others simply stare. These are not rare occurrences. The family encounters unsolicited looks and comments at restaurants, airports, stores, and even among doctors and nurses at some of Trae’s many medical appointments.

Recently, Trae and his mom were at a store, when a boy, about 6 years old, told his mom, “That baby looks weird!” His mom immediately and loudly shushed him.

Trae’s mom was livid, partly because she was fed up with the constant slew of stares and loud comments about her son, but also because the boy’s mom did the exact opposite of what she should have. She silenced and shamed her child instead responding effectively and compassionately.

Certainly, many of us have been there. We are going about our business when our child notices someone different: the woman with the large backside, the man in the wheelchair who is missing a leg, the child with Down syndrome. Our natural instinct is to shut down the situation as quickly as possible, but doing so sends a powerful message to our children.

Instead of shushing children for stating the obvious, that the person (or family) in front of them is appears different, parents can do the following:

1. Apologize. When your child behaves rudely, apologize on the child’s behalf, immediately and without excuse. Try something like: “I’m sorry my child spoke rudely.  He is curious about your son and didn’t respond appropriately.”

2. Introduce yourself. Follow up your apology with a personal introduction. “I’m Kate, and this is my son Jacob. What is your little boy’s name?” Be sure to address the child, as well. He or she shouldn’t be ignored. Say something like, “Hi there! How old are you?”

3. Don’t interrogate. There is no reason to ask what is “wrong” with a child or demand an explanation of the child’s condition or the family dynamic. If a parent wishes to share information about his or her child or family, that is their choice. If the child wishes to share, depending on the age and level of maturity and development, that is the child’s choice.

4. Treat the child like a person, because he or she is a person. Smile, offer a compliment, and make small talk. This is how friendships are formed.

5. Follow up with your child privately. Talk to your child about the appropriate way to respond to someone new. This might mean an immediate introduction, offering to share a toy or play together, or even something as simple as a smile or a high-five. Remind your child that it’s okay to notice difference, but questions and comments should be reserved for private, family conversations at a later time. You may not have all the right words to explain a situation, but remember that by being open and honest with your child, you are conditioning your child to know that he or she can come to you about any topic and be received with open arms and heart.

6. Use any mishaps as teachable moments, for both you and your child. Children will be children. They will say things they shouldn’t. If you don’t handle a situation well in the moment, admit that to your child and discuss what should be done differently in the future. If you do shush your child, apologize for doing so. And if your child, despite your preparations, responds to a situation inappropriately, talk about how it can be better handled in the future.

7. Evaluate your own relationships. How diverse is your circle of friends? Do you welcome others who are different from you? Do you have true friendships with others who don’t share your race, religion, age, or ability?  If your child were to look at you and your friends, would they see same-ness or acceptance of difference?  You cannot expect your child not to be intrigued by someone who looks different when the child is only around those who look and interact just like him or her.

Children are naturally curious and excited when they discover something or someone new. As parents, our job is to demonstrate to our children what empathy, compassion, friendship, and diversity looks like. Shushing is shame-inducing, not inclusion-promoting.

Next time, smile, say hello and give friendships a chance to form.

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How a Near-Stranger Changed My Little Girl's Life With a Pair of Shoes

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As I walked out the door, my 6-year-old, Lily, was worried. She always worries when I take Sarah to the doctor. But Sarah was breathing well — this was not one of her colds turned emergency. She was healthy. I had no qualms at all about telling Lily, “This is not a big deal. This will be a quick trip. I’ll be home in a few hours.”

A few hours later, I was in an ambulance on our way to be admitted to the second hospital of the day. We were rushing. They wanted to put her in an operating room right away. Would Lily think I’d lied?

My 3-year-old daughter was in the hospital again. Honestly, the surgeries are bad enough, but these unplanned trips really take a toll on the whole family.

It’s hard to express the feelings associated with these events. It’s happened often enough to feel familiar, familiar enough to even inspire a certain level of comfort. Sarah slept peacefully in the back of the ambulance while I chatted amiably in the front with the driver.

Familiar but discouraging. It can be really, really discouraging.

I don’t want to be the mom who knows the ER doctors by name and has favorites. I don’t want to be the mom who knows who to ask for when the nurse cannot get an IV in her arm. I don’t want to be an ambulance connoisseur. But I am.

Put on your game face. Wear optimism like armor.

Avoid discouragement, pessimism and frustration. Above all, don’t ever compare your kid to other kids. There isn’t a special needs handbook teaching us how to be parents, but if there was, that is what it would say. Block print, bold face, all caps: DON’T COMPARE.

It isn’t fair. But you can’t go there because your job — your one and only job in that time — is to help get your kid better. You can’t do that if you’re wrapped up in how unfair it all is. Life is unfair. That bit of pop wisdom doesn’t make you feel any better now than it did when you were a kid.

A good attitude is better medicine than anything a doctor can give, but it takes a lot of energy. Small things aren’t always small. When you need encouragement, small things are huge. It’s huge when people make dinner or send small gifts to the kids or help with cleaning. It’s love. It’s encouragement. It can be the antidote to wearisome pessimism.

One of the first people to offer her help and support and “anything you need” was Madison “Peach” Steiner-Akins. I don’t really know her — I’m friends with her on Facebook. She’s a vibrant, enthusiastic force and a champion for kindness. She’s an artist and an optimistic visionary determined to reshape the world.

She was offering the support of a community she built with smiles and art and joy.

Peach believes that kindness is contagious. She believes that small things make a big impact, and she believes that hope heals. So, she founded Peach’s Neet Feet. PNF uses a diverse group of artists, including Peach herself, who volunteer their time to make special shoes. Magic shoes.

shoes given to Beth's daughter from Peach's Neet Feet. one shoe has a picture of minnie mouse and the other shoe has a pink banner that says 'choose kind'

The shoes are custom painted for kids who need inspiration — kids who are fighting bigger battles than kids should have to fight. Each child has their own story and interests and dreams. These shoes provide the canvas for them to illustrate a small part of that.

When Sarah received her shoes, she knew they were for her right away. Minnie Mouse and rainbows! She was so excited. We put them on, and she immediately stood up a little straighter than usual. I don’t know whether they were a better fit for her foot than she was used to or if she was just excited and proud, but what happened next was pretty amazing. Sarah took a step. Then another one. Then, she walked all the way to her dad. It was not independent — I was helping her balance — but that was dramatic progress! Before that day, I had never seen Sarah move her left foot independently. I would literally have to pick up the foot and move it for her. She would lift her right foot and then would try to lift both feet together. Then, she’d fall. I was beginning to wonder if there was a neurological reason for the preference. Just seconds after putting on her “magic shoes,” Sarah was taking alternate steps. It was work, but she was working. The next day at school, her teachers and therapists also noticed the magic. Just a few days later, they removed the support from her gait trainer.

Beth's daughter walking in her new shoes from Peach's Neet Feet

On its own, that is pretty awesome, but it is just the beginning of the mission. The families are not asked to pay for the shoes with money — they are asked to pay in kindness. Wear the shoes. Be awesome. For payment, complete (at least) one random act of kindness.

With the shoes, Peach built a community. Our community shares stories and encourages each other. We draw strength and courage from each other. When someone needs a lift, she “Peach love bombs” them. She asks her people to help uplift families and do whatever they need. Siblings having a hard time? Parents overwhelmed? Families have different needs. The Peach community steps up, sending anything from coffee cards to toys for the siblings to cleaning supplies. Stuff is just stuff, but they are sending more than that. They are sending courage and hope and love. It is a beautiful and growing community of families and artists sharing stories and smiles.

Encouragement is not a small thing. Wanting to do something and believing you can are not trivial. Healing needs hope. Kindness spreads. Little things aren’t always little.

Peach’s Neet Feet uses art to inspire kids. It may sound small, but it isn’t. She’s doesn’t just say, “Get well.” She says, “Go be awesome! Inspire someone!” It’s a genius mission to spread kindness and healing hope. And it is working. For the kids, for their siblings and for the community.

This post originally appeared on Joyful Catholic Mom.

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