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A super-rare illness might take her sight, so she's seeing the world while she still can.

There’s a very real possibility that 15-year-old Alexis Meyers will become completely blind in the next few years. Before that happens, she and her family are trying their hardest to make sure she sees as much of the world as she can.

A super-rare illness might take her sight, so she's seeing the world while she still can.
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Even when she was little, Alexis knew something wasn’t quite right with her eyes.

She remembers it starting in third grade. "It was harder to read books, and I couldn't see the blackboard," she says. Her hearing loss that had started in kindergarten was worse too.

Alexis and her family at Disneyland Paris. Image via the Meyers family, used with permission.


After years of tests, the Meyers family and their doctors discovered the cause — a mutation of Alexis' OPA-1 gene. It's an extremely rare disorder that causes the cells in Alexis' optic nerves to atrophy, eventually causing blindness. At present, there's no cure.

Once she knew what she was facing, Alexis didn't shrink from it.

In seventh grade she stood in front of her class and gave a PowerPoint presentation about her genetic disorder. She explained what causes it and what it was doing to her eyesight and hearing. She shared that it could leave her blind before her 20th birthday. She was brave, factual, and didn't cry. After all, she already had a plan.

Alexis at Stonehenge. Image via the Meyers family, used with permission.

Alexis had always wanted to see the world someday. Her diagnosis simply moved up the schedule.

For the last few years, Alexis and her family have traveled as much as they can. They've visited the Grand Canyon, Mackinac Island, England, France, and Germany. Alexis loved Germany's castles — Heidelberg in particular. "There was so much history, so much celebration and so much food in Germany," she says. "Heidelberg was so big and beautiful— and it has the world's largest barrel inside it!" After a pause she adds conspiratorially, "It's supposed to be haunted too."

One of her favorite early trips was to Jamaica, where the family swam with dolphins and climbed waterfalls. Alexis loved every minute, but cautions folks against taking a horseback ride on the beach. "The horses in front of you will throw up sand with their feet and it gets in your face. It's really gross."

Most of Alexis' travel money comes through fundraisers. She's sold homemade jewelry or handcrafted dog treats to help pay for trips. Right now, she and her family are raising money with an online fundraising page.

Alexis' list of places to go and things to do is still growing.

Number one is to see Iceland's northern lights. Sometime in the next year, she'll do just that.

The Northern Lights tops Alexis' list of natural phenomenon she wants to see. Image via iStock.

The family is planning a trip to Iceland where they'll take a dip in the blue lagoon and watch auroras make the sky dance and change colors. Later they're hoping to visit Northern Ireland and walk the Giant's Causeway, travel to Rome to see the Colosseum, visit Australia and New Zealand, and then check out Kīlauea volcano in Hawaii.

Receiving the kind of diagnosis that Alexis did could be devastating and isolating for so many people. Thanks to her family and community, Alexis is determined to see the positives.

With their help, she's transforming it into an opportunity to create visual memories of the world she loves before she can’t anymore.

"I love seeing her face light up when she sees these places she's only read about before," says Alexis' mom Kristin. "We're doing what she wants to do and seeing what she wants to see as long as we can."

Eventually, Alexis wants to go to college and study to become a veterinarian. Second only to travel, she says, is her love of animals. But the cats and dogs can wait — for now, seeing the world is her first priority.

Courtesy of Amita Swadhin
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In 2016, Amita Swadhin, a child of two immigrant parents from India, founded Mirror Memoirs to help combat rape culture. The national storytelling and organizing project is dedicated to sharing the stories of LGBTQIA+ Black, indigenous people, and people of color who survived child sexual abuse.

"Whether or not you are a survivor, 100% of us are raised in rape culture. It's the water that we're swimming in. But just as fish don't know they are in water, because it's just the world around them that they've always been in, people (and especially those who aren't survivors) may need some help actually seeing it," they add.

"Mirror Memoirs attempts to be the dye that helps everyone understand the reality of rape culture."

Amita built the idea for Mirror Memoirs from a theater project called "Undesirable Elements: Secret Survivors" that featured their story and those of four other survivors in New York City, as well as a documentary film and educational toolkit based on the project.

"Secret Survivors had a cast that was gender, race, and age-diverse in many ways, but we had neglected to include transgender women," Amita explains. "Our goal was to help all people who want to co-create a world without child sexual abuse understand that the systems historically meant to help survivors find 'healing' and 'justice' — namely the child welfare system, policing, and prisons — are actually systems that facilitate the rape of children in oppressed communities," Amita continues. "We all have to explore tools of healing and accountability outside of these systems if we truly want to end all forms of sexual violence and rape culture."

Amita also wants Mirror Memoirs to be a place of healing for survivors that have historically been ignored or underserved by anti-violence organizations due to transphobia, homophobia, racism, xenophobia, and white supremacy.

Amita Swadhin

"Hearing survivors' stories is absolutely healing for other survivors, since child sexual abuse is a global pandemic that few people know how to talk about, let alone treat and prevent."

"Since sexual violence is an isolating event, girded by shame and stigma, understanding that you're not alone and connecting with other survivors is alchemy, transmuting isolation into intimacy and connection."

This is something that Amita knows and understands well as a survivor herself.

"My childhood included a lot of violence from my father, including rape and other forms of domestic violence," says Amita. "Mandated reporting was imposed on me when I was 13 and it was largely unhelpful since the prosecutors threatened to incarcerate my mother for 'being complicit' in the violence I experienced, even though she was also abused by my father for years."

What helped them during this time was having the support of others.

"I'm grateful to have had a loving younger sister and a few really close friends, some of whom were also surviving child sexual abuse, though we didn't know how to talk about it at the time," Amita says.

"I'm also a queer, non-binary femme person living with complex post-traumatic stress disorder, and those identities have shaped a lot of my life experiences," they continue. "I'm really lucky to have an incredible partner and network of friends and family who love me."

"These realizations put me on the path of my life's work to end this violence quite early in life," they said.

Amita wants Mirror Memoirs to help build awareness of just how pervasive rape culture is. "One in four girls and one in six boys will be raped or sexually assaulted by the age of 18," Amita explains, "and the rates are even higher for vulnerable populations, such as gender non-conforming, disabled, deaf, unhoused, and institutionalized children." By sharing their stories, they're hoping to create change.

"Listening to stories is also a powerful way to build empathy, due to the mirror neurons in people's brains. This is, in part, why the project is called Mirror Memoirs."

So far, Mirror Memoirs has created an audio archive of BIPOC LGBTQI+ child sexual abuse survivors sharing their stories of survival and resilience that includes stories from 60 survivors across 50 states. This year, they plan to record another 15 stories, specifically of transgender and nonbinary people who survived child sexual abuse in a sport-related setting, with their partner organization, Athlete Ally.

"This endeavor is in response to the more than 100 bills that have been proposed across at least 36 states in 2021 seeking to limit the rights of transgender and non-binary children to play sports and to receive gender-affirming medical care with the support of their parents and doctors," Amita says.

In 2017, Mirror Memoirs held its first gathering, which was attended by 31 people. Today, the organization is a fiscally sponsored, national nonprofit with two staff members, a board of 10 people, a leadership council of seven people, and 500 members nationally.

When the pandemic hit in 2020, they created a mutual aid fund for the LGBTQIA+ community of color and were able to raise a quarter-million dollars. They received 2,509 applications for assistance, and in the end, they decided to split the money evenly between each applicant.

While they're still using storytelling as the building block of their work, they're also engaging in policy and advocacy work, leadership development, and hosting monthly member meetings online.

For their work, Amita is one of Tory's Burch's Empowered Women. Their donation will go to Mirror Memoirs to help fund production costs for their new theater project, "Transmutation: A Ceremony," featuring four Black transgender, intersex, and non-binary women and femmes who live in California.

"I'm grateful to every single child sexual survivor who has ever disclosed their truth to me," Amita says. "I know another world is possible, and I know survivors will build it, together with all the people who love us."

To learn more about Tory Burch and Upworthy's Empowered Women program visit https://www.toryburch.com/empoweredwomen/. Nominate an inspiring woman in your community today!

This article originally appeared on 11.21.16


Photographer Katie Joy Crawford had been battling anxiety for 10 years when she decided to face it straight on by turning the camera lens on herself.

In 2015, Upworthy shared Crawford's self-portraits and our readers responded with tons of empathy. One person said, "What a wonderful way to express what words cannot." Another reader added, "I think she hit the nail right on the head. It's like a constant battle with yourself. I often feel my emotions battling each other."

So we wanted to go back and talk to the photographer directly about this soul-baring project.

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When a pet is admitted to a shelter it can be a traumatizing experience. Many are afraid of their new surroundings and are far from comfortable showing off their unique personalities. The problem is that's when many of them have their photos taken to appear in online searches.

Chewy, the pet retailer who has dedicated themselves to supporting shelters and rescues throughout the country, recognized the important work of a couple in Tampa, FL who have been taking professional photos of shelter pets to help get them adopted.

"If it's a photo of a scared animal, most people, subconsciously or even consciously, are going to skip over it," pet photographer Adam Goldberg says. "They can't visualize that dog in their home."

Adam realized the importance of quality shelter photos while working as a social media specialist for the Humane Society of Broward County in Fort Lauderdale, Florida.

"The photos were taken top-down so you couldn't see the size of the pet, and the flash would create these red eyes," he recalls. "Sometimes [volunteers] would shoot the photos through the chain-link fences."

That's why Adam and his wife, Mary, have spent much of their free time over the past five years photographing over 1,200 shelter animals to show off their unique personalities to potential adoptive families. The Goldbergs' wonderful work was recently profiled by Chewy in the video above entitled, "A Day in the Life of a Shelter Pet Photographer."