Update: Sophia passed away in May of 2019 surrounded by her loved ones. Natalie Weaver continues to use her voice to advocate for people with disabilities.

Natalie Weaver's holiday photo should have been received with joy like any other family's. Instead, a vile commenter attacked her and her daughter Sophia.

The photo shows Weaver's husband Mark sitting in front of the tree with their 10-year-old daughter, Sophia. As Sophia gazes at the tree in wonder, her smiling dad helps her hang an ornament. It's a sweet photo of a father and his obviously unique daughter sharing a warm holiday moment.

But one woman saw something else—an opportunity to spew hatred and prejudice toward a child with profound needs.


Weaver received a vile message in response to her photo. But rather than ignore it, she published the comment so that people could see what kind of stigma and unkindness people with disabilities can face.

Unfortunately, such comments are not all that uncommon for Sophia's family.

Sophia's deformities and disabilities make her one of a kind, but they aren't what define her.

Sophia was born with facial, hand, and foot deformities. Weaver says she's the only person in the world with her features, and also the only person in the world with her combination of conditions.

"Each year has brought a new diagnosis for Sophia," says Weaver. Her health challenges include an extremely rare immune deficiency, Type 1 diabetes, and Rett Syndrome, a neurological disorder that causes seizures, breathing disorders, tremors, and many other issues, and has left Sophia unable to walk, talk, and use her hands. She needs around the clock care.

But Sophia is so much more than a child with profound needs. She's a daughter, a sister to two younger siblings, and in some ways, a typical sassy 10-year-old.

"Though she goes through a lot," says Weaver, "she is the strongest person I know. She handles it all with a smile and laughs a lot. She has an attitude, rolls her eyes at me and is silly! When her body calms, and the neurological storms pass (this can last a minute, days and weeks) sometimes she surprises us with a word like 'annoying' (she was calling me that!)."

Weaver says that Sophia has brought a lot to their family:

"Though we experience heartache and struggles, Sophia has changed our lives for the better. She makes our live richer, fuller and filled with love. She's taught us to live in the moment and to appreciate the small things. She is my child, and I love her just the same as any other parent loves their child. It seems some people don't understand that. Society has defined beauty, and value but because of Sophia I now have my own definition, and I know what true beauty and value are. Sophia is beautiful, and valuable, and is filled with so much happiness and love. She deserves respect and dignity just like everyone else."

"People often tell me to kill my child, to put her out of her misery . . ."

Weaver decided years ago that she wasn't going to hide her daughter away from the world. She became an advocate for people with disabilities and deformities and shares her family's life with Sophia openly on social media.

Unfortunately, living openly with differences sometimes means receiving horrible, vile comments from the dregs of humanity.

"I've received a lot of comments since I decided to share a glimpse into our lives and Sophia's story to change the stigma surrounding profoundly disabled kids and in Sophia's case also facial deformities. You don't hear or see families like mine often. People often tell me to kill my child, to put her out of her misery, and that she looks horrible, scary and that she is worthless. I receive many different forms of hate speech, discrimination and even death threats against my daughter and me. Someone used her image to promote abortion. In real life, people have screamed at the top of their lungs and laughed, called her a monster, point her out, stare, whisper or pretend she doesn't exist."

Weaver says that people think there's "a magical plug to pull," but there's not. "Sophia is alive because she is strong and her body is strong," says Weaver. "We've never taken any unnecessary measures to keep her alive. We will lose her one day, but while she is here, we will take every step possible to decrease her pain and make her quality of life the best it can be, which is the only reason she's had 28 surgeries."

The idea that anyone would tell a parent their child should die is unfathomable. To imply that they should kill their own child themselves is the height of human cruelty.

We can all help fight the stigma and support people like Sophia and her family.

To learn more about battling the stigma, Weaver suggests checking out https://faceequalityinternational.org, an organization founded by a man with a facial disfigurement and which seeks to create "a world where everyone is treated fairly whatever their face looks like."

Weaver also founded Sophia's Voice, a non-profit organization in Sophia's honor, to help others by providing medical assistance and equipment to people with disabilities, and she has dedicated her Twitter, Facebook, and Instagram accounts to sharing a glimpse into her family's life to change the stigma surrounding kids with facial deformities and profound disabilities.

"I was a very private person for the first 7.5 yrs of Sophia's life because of people like the lady who made this public comment," says Weaver. "Once I decided to no longer hide, I have made it my mission to fight for the dignity and respect that profoundly disabled people and people with facial deformities deserve."

Images courtesy of Letters of Love
True

When Grace Berbig was 7 years old, her mom was diagnosed with leukemia, a cancer of the body’s blood-forming tissues. Being so young, Grace didn’t know what cancer was or why her mother was suddenly living in the hospital. But she did know this: that while her mom was in the hospital, she would always be assured that her family was thinking of her, supporting her and loving her every step of her journey.

Nearly every day, Grace and her two younger sisters would hand-make cards and fill them with drawings and messages of love, which their mother would hang all over the walls of her hospital room. These cherished letters brought immeasurable peace and joy to their mom during her sickness. Sadly, when Grace was just 10 years old, her mother lost her battle with cancer.“

Image courtesy of Letters of Love

Losing my mom put the world in a completely different perspective for me,” Grace says. “I realized that you never know when someone could leave you, so you have to love the people you love with your whole heart, every day.”

Grace’s father was instrumental in helping in the healing process of his daughters. “I distinctly remember my dad constantly reminding my two little sisters, Bella and Sophie, and I that happiness is a choice, and it was now our job to turn this heartbreaking event in our life into something positive.”

When she got to high school, Grace became involved in the Leukemia & Lymphoma Society and a handful of other organizations. But she never felt like she was doing enough.

“I wanted to create an opportunity for people to help beyond donating money, and one that anyone could be a part of, no matter their financial status.”

In October 2018, Grace started Letters of Love, a club at her high school in Long Lake, Minnesota, to emotionally support children battling cancer and other serious illnesses through letter-writing and craft-making.


Image courtesy of Letters of Love

Much to her surprise, more than 100 students showed up for the first club meeting. From then on, Letters of Love grew so fast that during her senior year in high school, Grace had to start a GoFundMe to help cover the cost of card-making materials.

Speaking about her nonprofit today, Grace says, “I can’t find enough words to explain how blessed I feel to have this organization. Beyond the amount of kids and families we are able to support, it allows me to feel so much closer and more connected to my mom.”

Since its inception, Letters of Love has grown to more than 25 clubs with more than 1,000 members providing emotional support to more than 60,000 patients in children’s hospitals around the world. And in the process it has become a full-time job for Grace.

“I do everything from training volunteers and club ambassadors, paying bills, designing merchandise, preparing financial predictions and overviews, applying for grants, to going through each and every card ensuring they are appropriate to send out to hospitals.”

Image courtesy of Letters of Love

In addition to running Letters of Love, Grace and her small team must also contend with the emotions inherent in their line of work.

“There have been many, many tears cried,” she says. “Working to support children who are battling cancer and other serious and sometimes chronic illnesses can absolutely be extremely difficult mentally. I feel so blessed to be an organization that focuses solely on bringing joy to these children, though. We do everything we can to simply put a smile on their face, and ensure they know that they are so loved, so strong, and so supported by people all around the world.”

Image courtesy of Letters of Love

Letters of Love has been particularly instrumental in offering emotional support to children who have been unable to see friends and family due to COVID-19. A video campaign in the summer of 2021 even saw members of the NFL’s Minnesota Vikings and the NHL’s Minnesota Wild offer short videos of hope and encouragement to affected children.

Grace is currently taking a gap year before she starts college so she can focus on growing Letters of Love as well as to work on various related projects, including the publication of a children’s book.

“The goal of the book is to teach children the immense impact that small acts of kindness can have, how to treat their peers who may be diagnosed with disabilities or illness, and how they are never too young to change the world,” she says.

Since she was 10, Grace has kept memories of her mother close to her, as a source of love and inspiration in her life and in the work she does with Letters of Love.

Image courtesy of Grace Berbig

“When I lost my mom, I felt like a section of my heart went with her, so ever since, I have been filling that piece with love and compassion towards others. Her smile and joy were infectious, and I try to mirror that in myself and touch people’s hearts as she did.”

For more information visit Letters of Love.

Please donate to Grace’s GoFundMe and help Letters of Love to expand, publish a children’s book and continue to reach more children in hospitals around the world.

Peter Dinklage in 2013.

Disney has taken another step toward diversifying its iconic princesses by casting Rachel Zegler to play Snow White in its upcoming live-action version of the Grimms’ fairy tale. Zegler’s mother is of Colombian descent and her father has Polish roots. The 20-year-old actress recently wowed audiences in Steven Spielberg’s “West Side Story.”

Disney has also announced that Halle Bailey, a Black actress, will play Ariel in its upcoming live-action version of “The Little Mermaid.”

Disney’s big push toward inclusivity in the casting of its princesses is definitely a welcome move, but according to actor Peter Dinklage, the Mouse may be missing the forest for the trees.

Dinklage, who was born with a form of dwarfism named achondroplasia, criticized Disney on the “WTF with Marc Maron” podcast for being hypocritical for focusing on race while completely missing the ball when it comes to people with disabilities.

"There's a lot of hypocrisy going on, I've gotta say, from being somebody who's a little bit unique," Dinklage told Maron.

"Really? Like what?" Maron asked. "What do you see?"


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Images courtesy of AFutureSuperhero and Friends and Balance Dance Project
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The day was scorching hot, but the weather wasn’t going to stop a Star Wars Stormtrooper from handing out school supplies to a long line of eager children. “You guys don’t have anything illegal back there - any droids or anything?” the Stormtrooper asks, making sure he was safe from enemies before handing over a colorful backpack to a smiling boy.

The man inside the costume is Yuri Williams, founder of AFutureSuperhero And Friends, a Los Angeles nonprofit that uplifts and inspires marginalized people with small acts of kindness.

Yuri’s organization is one of four inaugural grant winners from the Upworthy Kindness Fund, a joint initiative between Upworthy and GoFundMe that celebrates kindness and everyday actions inspired by the best of humanity. This year, the Upworthy Kindness Fund is giving $100,000 to grassroots changemakers across the world.

To apply, campaign organizers simply tell Upworthy how their kindness project is making a difference. Between now and the end of 2021, each accepted individual or organization will receive $500 towards an existing GoFundMe and a shout-out on Upworthy.

Meet the first four winners:

1: Balance Dance Project: This studio aims to bring accessible dance to all in the Sacramento, CA area. Lead fundraiser Miranda Macias says many dancers spend hours a day at Balance practicing contemporary, lyrical, hip-hop, and ballet. Balance started a GoFundMe to raise money to cover tuition for dancers from low-income communities, buy dance team uniforms, and update its facility. The $500 contribution from the Kindness Fund nudged Balance closer to its $5,000 goal.

2: Citizens of the World Mar Vista Robotics Team: In Los Angeles, middle school teacher James Pike is introducing his students to the field of robotics via a Lego-building team dedicated to solving real-world problems.

James started a GoFundMe to crowdfund supplies for his students’ team ahead of the First Lego League, a school-against-school matchup that includes robotics competitions. The team, James explained, needed help to cover half the cost of the pricey $4,000 robotics kit. Thanks to help from the Upworthy Kindness Fund and the generosity of the Citizens of the World Middle School community, the team exceeded its initial fundraising goal.

Citizens of the World Mar Vista Robotics Team video update youtu.be

3: Black Fluidity Tattoo Club: Kiara Mills and Tann Parker want to fix a big problem in the tattoo industry: there are too few Black tattoo artists. To tackle the issue, the duo founded the Black Fluidity Tattoo Club to inspire and support Black tattooers. While the Brooklyn organization is open to any Black person, Kiara and Tann specifically want to encourage dark-skinned artists to train in an affirming space among people with similar identities.

To make room for newcomers, the club recently moved into a larger studio with a third station for apprentices or guest artists. Unlike a traditional fundraiser that supports the organization exclusively, Black Fluidity Tattoo Club will distribute proceeds from GoFundMe directly to emerging Black tattoo artists who are starting their own businesses. The small grants, supported in part with a $500 contribution from the Upworthy Kindness Fund, will go towards artists’ equipment, supplies, furnishings, and other start-up costs.

4: AFutureSuperhero And Friends’ “Hope For The Holidays”: Founder Yuri Williams is fundraising for a holiday trip to spread cheer to people in need across all fifty states.

Along with collaborator Rodney Smith Jr., Yuri will be handing out gifts to children, adults, and animals dressed as a Star Wars’ Stormtrooper, Spiderman, Deadpool, and other movie or comic book characters. Starting this month, the crew will be visiting children with disabilities or serious illnesses, bringing leashes and toys to animal shelters for people taking home a new pet, and spreading blessings to unhoused people—all while in superhero costume. This will be the third time Yuri and his nonprofit have taken this journey.

AFutureSuperhero started a GoFundMe in July to cover the cost of gifts as well as travel expenses like hotels and rental cars. To help the nonprofit reach its $15,000 goal, the Upworthy Kindness Fund contributed $500 towards this good cause.

Think you qualify for the fund? Tell us how you’re bringing kindness to your community. Grants will be awarded on a rolling basis from now through the end of 2021. For questions and more information, please check out our FAQ's and the Kindness Toolkit for resources on how to start your own kindness fundraiser.

A group of around 20 moms gathered at a Boston area high school to vent their frustrations loudly.

The pandemic has been hard on everyone, but there are certain groups of people who have faced particularly intense challenges these past two years. Healthcare workers? For sure. Teachers? Definitely. Parents? Um, yes.

Moms specifically? Yesssss.

It's hard to describe how hard navigating the pandemic with kids has been. Figuring out childcare when schools and daycare centers shut down, managing kids' remote or hybrid schooling, constantly making decisions about what's safe and what's not, dealing with the inconsistency and chaos of it all, weighing risks with who is vaccinated and who isn't—none of it has been easy. Many parents are also raising kids with mental, emotional, behavioral or physical challenges that have only been made harder by pandemic life.

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This article originally appeared on November 5, 2013


When I saw these incredible photos Angelo Merendino took of his wife, Jennifer, as she battled breast cancer, I felt that I shouldn't be seeing this snapshot of their intimate, private lives.





















The photos humanize the face of cancer and capture the difficulty, fear, and pain that they experienced during the difficult time.

But as Angelo commented: "These photographs do not define us, but they are us."

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