To the Girl Who Was Just Diagnosed With Ocular Albinism

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Well, hello there, little me. You had quite a bit of a rough day, haven’t you?

You spent a day not doing baby things, like napping or playing with your toys, but instead found yourself with your parents in a doctor’s office not too far from Orlando. You were poked and prodded and had light shined into your eye, all because your mom and dad noticed you weren’t making eye contact or tracking like a “typical” baby should.

That day was a frightening day for all involved, which ironically landed on all days, the day the Challenger exploded. A double day in history for your family.

baby girl in a yellow dress with a yellow bow

I ain’t going to lie to you, little me — ocular albinism is a label not everyone wants, being legally blind and living a life restricted in more ways then one. Not being able to drive or participate in sports, being denied friendships and typical kid-like things because you’re different. It’s a devastating thing to know you might never fit in. You and your parents will find themselves crying some nights, wishing this would never happen to you and that it would magically go away.

Life is going to be hard; vision therapy and hospital visits will replace things like Gymboree or day care. Instead of cutesy circle time songs and finger games, you will constantly be tested by doctors and forced to explore the world in different ways through your vision therapy teachers, who will follow you up until you’re in high school.

People will judge you, interrupt your normal life with mobility lessons and IEP meetings, and make your life a living hell. Nobody seems to take you seriously, and you will always struggle with trying to fit in.

But your tough and busy youth is just a small part of your life. With every bad experience comes a new opportunity to grow and prove the naysayers wrong. Everything you learned that you thought would be a waste of time actually comes in handy. Independence. You will earn it through hard work and determination. The dreams that got lost on that day in 1986 will come true. You’ll go to college and graduate, move out of state and land your dream job at Disney. There really is light at the end of the tunnel.

The next couple years will be hard, but don’t worry. It is worth it in the end. Although you can’t see it right away, the world is a beautiful place. You will live your life essentially limitless. Your eyes will not define you. Your strength to overcome will.

Don’t be afraid, little one. You got this.

Follow this journey on Legally Blind Bagged.

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.

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Many People Comment on My Child With Albinism, but This One Stood Out

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When my daughter, Scotlyn, was born, she had high levels of jaundice, so they sent us home and told us to place her either in the sun or in front of windows in the sun. Five months later with a diagnosis of albinism under our belts, we now have strict instructions to keep her out of the sun. In fact, she has a whole wardrobe quickly filling up with full-body UV swimsuits, hats, sunglasses and soon a daily dose of head-to-toe sunscreen. I imagine we’ll get so good at spooning out tablespoons of Banana Boat, and lathering it between each finger and in the crooks of her ears, that it will turn into a ritual like brushing our teeth.

So earlier this week when a lady at the drug store told me my baby was the whitest baby she has ever seen, but will probably be the first teenager out suntanning, I just smile. It doesn’t end there, of course. She continues on about teenagers and tanning, and as I walk away, she turns to her friend to share whispers and stares at my fair-haired baby.

Mother laying next to her baby.

This scenario happens almost every time I am out with Scotlyn, but it’s a different store and a different woman. Their comments make me uncomfortable because they bring with them a fear that my daughter will have to grow up hearing how white her skin and hair is over and over again. I try not to let my mind play out these situations, which may or may never happen, but I can’t help it. Maybe she’s on the playground and a little boy wants to know why on the hottest day of the summer she’s wearing a long-sleeved shirt and sneakers instead of sandals. Or maybe she’s 16 and a girl in her class wants to know what she does to get her hair that white.

Scotlyn’s less than a year old now, but she might grow up to have low vision and may not always be able to perfectly see you, as is the case with most people with albinism. But she will always hear you, so I’d like to tell this lady, the future little boy at the playground or girls in her class to please choose their comments carefully.

Later, I returned to the same drug store with a sense of dread and was met with more comments. But this time as I left the store, it was the unmistakable tone of an older gentlemen. “Hey, miss!” he shouted. When I turned, I recognized him from the card aisle where I was trying to balance a basketful of baby items in one hand and Scotlyn in the other. I had to stop and put everything down, so I could hold her by both arms and let her bounce, her new favorite pastime. He continued talking as I strapped Scottie into her car seat. I half ignored him while I tried to get her out of the sun.

“It’s so nice to see the love you have for your daughter,” he told me. “I can tell you’re a good mom, so good job. They don’t stay that age for long, and I miss mine.” His comment took me off guard because it wasn’t what I was expecting to hear. On this day, we were just like any other mother and daughter out buying diaper cream. We left the store without remarks of whiteness, only a lasting impression of love.

To that gentleman at the drug store: thank you for seeing beyond the white hair and into our hearts.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. 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.

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Stunning Photo Series Shows Albinism in a Way Society So Rarely Sees It

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Photographer Angelina d’Auguste chose to photograph portraits of people with albinism for her senior thesis project at the Fashion Institute of Technology in New York City in May, and the results are stunning.

Most people have never interacted with anyone with albinism,” d’Auguste told Refinery29. “Unfortunately, it is difficult for [people with albinism] to fit in society, so I wanted to show their distinct, beautiful features in a positive way.”

Image courtesy of Angelina d’Auguste child lying on pillow
Image courtesy of Angelina d’Auguste
Image courtesy of Angelina d’Auguste boy looking sad
Image courtesy of Angelina d’Auguste

Albinism is a genetic skin condition that reduces the amount of melanin pigment formed in the skin, hair and/or eyes, according to the National Organization for Albinism and Hypopigmentation (NOAH). Approximately one in 18,000 to 20,000 people in the United States is reported to have some type of albinism, and those with the condition also have vision problems that eyeglasses cannot correct, according to NOAH.

D’Auguste told Refinery29 her subjects recalled being teased when they were young, but as they’ve gotten older most have learned to embrace the condition.

“Having albinism…broke me out of my shell, because I am very shy,” one subject told D’Auguste. “It is a big part of who I am, and I wouldn’t trade that for the world.”

See more from the stunning series below:

Image courtesy of Angelina d’Auguste girl against a wall
Image courtesy of Angelina d’Auguste
man looking down
Image courtesy of Angelina d’Auguste
Image courtesy of Angelina d’Auguste woman standing next to chair
Image courtesy of Angelina d’Auguste
Image courtesy of Angelina d’Auguste baby in highchair
Image courtesy of Angelina d’Auguste
man looking down
Image courtesy of Angelina d’Auguste
woman near bed Image courtesy of Angelina d’Auguste
Image courtesy of Angelina d’Auguste
Image courtesy of Angelina d’Auguste woman sitting up looking at camera
Image courtesy of Angelina d’Auguste
man sitting on chair Image courtesy of Angelina d’Auguste
Image courtesy of Angelina d’Auguste
Image courtesy of Angelina d’Auguste image of boy staring
Image courtesy of Angelina d’Auguste
Image courtesy of Angelina d’Auguste girl leaning against dresser
Image courtesy of Angelina d’Auguste
Image courtesy of Angelina d’Auguste boy looking away
Image courtesy of Angelina d’Auguste

For more images, be sure to visit Angelina d’Auguste’s website.

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Why I Wrote This Letter to the Class of My Daughter With Albinism

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This is normally the greatest time of year for the introverted side of me. I survived the summer and now I get to send my little one back to school. Finally, I get to sink into a quiet routine where my work is completed in the daylight hours, instead of between 9 p.m. and 2 a.m., and no one is spilling my tea.

But this year is different. This year is “for realz.” This year my daughter with special needs will leave her special education bubble and take a seat in a mainstream classroom. And instead of eagerly awaiting the start of school, my heart feels like lead and a sad lump has taken root in my throat.

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I have to remind myself that she will have an aide by her side. I have to tell myself she is very different from me, and quite possibly, the strongest and most extroverted person on the planet. Her laugh is contagious, and she will hopefully find a few kids who will truly get her.

Instead of sitting around imagining the worst of nosy questions going unanswered and looks being exchanged, I needed to do something productive to help ease the transition.

I decided to make this letter for her. And, of course, she wouldn’t sit still for photos, so I ended up including all the attempts that I took, which, in the end, capture her in a more real way than a posed picture ever could. 

And I pray the kids in her class will be able to take it in and choose to be patient with my funny, brave and beautiful girl.

All about Juniper

Hi! My name is Ruby and I’m in your class this year.

There are a couple things about me that are unique, but I’m still learning to talk, so it’s hard for me to explain with words.

I prefer to wear big shoes & coats, the extra room feels more cozy to me.

I have something called Albinism“Albinism” is a fancy word that means my body was born without color or “pigment.” It affects my eyes, skin & hair.

Because of Albinism:
• My hair is white like Elsa’s from “Frozen.”
• My skin is white & I always wear sunscreen so I don’t get sunburned.
• My light blue eyes don’t see clearly & also move a little from side to side.
• I have to hold things near my eyes to see.

I might get closer to you than other people do, but I’m not trying to be rude or make you uncomfortable, I just want to see you better.

If you wave at me instead of using your words to say “hi,” I might not see or recognize you. Other times I might accidentally bump into you.

I can’t understand the emotions on your face. If we are playing together and I do something that makes you mad, please tell me nicely with your words exactly what I should stop doing. Otherwise I might not even know your are upset!

Speaking isn’t easy for me, but the more you talk to me, the faster I will catch up with my words & be able to talk to you.

Even though I’m different from you in a couple of ways, I’m the same in many others! I love to laugh, run and play.

My favorite things:
• Hobbies: Drawing, running races, singing
• Movies: “Big Hero 6” & “The Amazing Spider-Man”
• Toys: Barbies, cars & doll houses
• Food: Macaroni & cheese, ice cream
• Books: “Curious George,” “Pinkalicious,” “Mother Goose”
• Holiday: Halloween (dressing up is the BEST!)

Please be patient with me and I hope we can be friends!

Follow this journey on Katecosgrove.com.

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A Note to My Difficult-to-Say (And Even More Difficult-to-Understand) Condition

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Autosomal Recessive Ocular Albinism: A condition with a long-winded name that takes forever to pronounce and even longer to explain. It’s a condition that struck my unsuspecting family like a bolt of lightening. It’s an ever-growing pain in the rear of my eyes that strikes unexpectedly and makes me feel like the “retard” society claims I am.

The day my mom and dad found out about your presence was, oddly enough, the day of the Challenger disaster — January 28, 1986 — when I was just a day shy of 4 months old. My parents sat on the side of the road as they watched their dreams for me go up with the rocket, only to explode minutes later.

Little did they know the life I was about to live would be one hell of an adventure.

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From the start, your rarity struck doctors as odd, and I spent my early years being poked, prodded and measured because of you. They wanted to know more about you, why you came so suddenly to a couple who had no albino traits in the family, why I wasn’t fully albino, why I would flinch when someone shined something in my face, why I would panic in crowds and get lost in the snow, why I just couldn’t focus without a crazy head tilt or why I have what I now jokingly refer to as “my gangsta lean.”

School was a big let down, and you did everything to make it hard on me. But teachers looked beyond you for the most part and saw the brains behind the blindness. You might have held me back temporarily, but not for long.

You became a bit of a pain growing up; I was never quite the normal kid my parents tried to raise. You were the reason I got beaten up, tossed off retaining walls, shoved into fences and had rocks thrown at me. Kids are so cruel (and they aren’t much better in adulthood, either). I missed out on job opportunities because of you, and college entrance exams became a hassle because your picky attitude wouldn’t let me read scantron sheets. Throughout my entire life, people assumed I was stupid because everything I saw looked like a crappy pixelated camera phone pic from 2005. I’m also face blind because of you, which makes situations awkward when meeting new people. (Raise your hand out there if I ever referred to you as someone else.)

But life has an uncanny way of turning itself around.

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As the years went by and I entered adult life with you still shaking my eyes and rattling my brain, I managed to live out many of my dreams. I went on to college and ultimately chased down my childhood dream of working for Disney. I defied the odds against me by reaching goals they told my parents I would never reach that day back in 1986 — from riding a bike to working a computer to even reading a printed word.

You still rear your ugly head some days, as I work in my ticket window and get weird stares from guests while I read their IDs. I get my fair share of rude comments and often feel embarrassed asking for help. And on some days, you fry my brain so hard I’m shaking in pain from the migraines you give me. (C’mon, give me a break already!)

Looking back on the almost 30 years I’ve been on this planet, I’ve learned one thing.

You don’t define who I am. I do.

My life may not be easy, but I can’t let that stop me from making it in this world. You will always be a constant struggle, but because of you, I am here.

I made it, whether you were in my corner or not.

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The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? 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.

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Baby With Albinism Has Incredible Reaction to her Mother's Singing

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This video will make you melt.

Little 7-month-old Louise has albinism, according to the video below. Albinism is an inherited condition where people are born with little or no pigment in their eyes, skin or hair, according to the National Organization for Albinism and Hypopigmentation. It also results in vision problems.

Louise only recently got glasses and was able to see her mother for the first time, according to her YouTube channel. In the video below, she gets adorably emotional while her mother sings “Amazing Grace” to her.

Watch the incredibly sweet interaction in the video below:

h/t GodVine

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