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Meet 8 precious kids who have rare diseases — and learn all about them.

They may not be common, but a whole lot of people are affected by rare diseases.

A disease is considered rare in the U.S. when fewer than 200,000 people have it at any given time and in Europe when it affects fewer than 1 in 2,000 people.

In the EU and U.S. combined, as many as 60 million people may experience one — because there are around 7,000 known rare diseases.


Ceridwen Hughes, a U.K.-based photographer, has a particular interest in rare diseases because her son Isaac was born with one.

Hughes, frustrated with the assumptions people made about Isaac based on his appearance, decided to start a community she called Same But Different. "I very much wanted people to see the person behind the condition," she told Upworthy.

She later launched a photo series called the Rare Project, where she captures photos of children with different rare diseases and helps them tell their stories. She puts a great amount of care into taking several photos of each subject and learning about their histories, struggles, and triumphs from their parents.

To further the spread of awareness, Hughes shared with us the following eight photos she took of children with rare diseases.

Below each is a brief description of the disease and, in some cases, a little info about the children. You can click through to read more about them. Up first is her son Isaac!

1. Isaac, who has Moebius syndrome

All photos belong to Ceridwen Hughes/Same But Different and are shared here with permission.

A rare neurological condition that affects facial muscles by weakening or paralyzing them, Moebius syndrome makes it impossible for the person to smile, frown, or raise their eyebrows, among other limitations. The muscle weakness also makes it difficult for babies with Moebius syndrome to eat.

2. Grace, who has periventricular leukomalacia (PVL)

PVL is a rare condition where the white matter in the brain dies due to a lack of oxygen or blood flow. Babies don't usually have symptoms, but as children get older, they are "at risk for motor disorders, delayed mental development, coordination problems, and vision and hearing impairments."

Grace also has some other health conditions in addition to PVL. "Grace is a wonderful child whom we love very much," her mom told Same But Different. "We encourage her to try everything and allow her to make her own decisions (within reason!)."

3. Mari, who has WAGR syndrome

Touching 1 in 500,000 to 1 in a million people, WAGR syndrome is a disorder that affects many of the body's systems. In Mari's case, she has experienced a bowel malrotation, seven tumors that required surgery and radiation, and eye surgery. She is legally blind.

“It is very rewarding having such a lovely little girl who has overcome so many hurdles and is coming on in leaps and bounds," her mom Caryl told Same But Different. "We are so proud of her and she constantly amazes us with her capabilities despite her difficulties.”

4. Jake, who has Angelman syndrome

A complex genetic disorder that mainly affects the nervous system, Angelman syndrome causes "delayed development, intellectual disability, severe speech impairment, and problems with movement and balance." Jake wasn't diagnosed until he was 7 years old.

"Most people who meet Jake are greeted with a hug but then they struggle to communicate with him. His smile says a thousand words," his mom told Same But Different. "I think it is important that people have a better understanding of rare diseases. I believe that with greater awareness there will be more acceptance. "

5. April, who has Hurler syndrome

Hurler syndrome is a genetic metabolic disorder that prevents the body from breaking down glycosaminoglycans, which are long chains of sugar molecules, because of a missing enzyme. Without it, glycosaminoglycans build up in the body and damage internal organs. Hurler syndrome is treated with IV enzyme replacement therapy.

6. James, who has Coffin-Lowry syndrome

Affecting 1 in 40,000 to 1 in 50,000 people, Coffin-Lowry syndrome presents differently in boys and girls. Boys with the genetic disorder suffer from "severe to profound intellectual disability and delayed development." James, who is nonverbal, can sometimes feel frustrated when others don't understand him. That makes every day more challenging because he cannot communicate his needs, such as hunger and thirst. He also has low muscle tone and low mobility.

"James is our little boy and all we want is that as he grows older he is accepted just the same as any other child would be," his parents told Same But Different. "He has so much to give and the world is definitely a better place with him in it."

7. Isabel — HSV encephalitis

HSV-1 encephalitis is a rare but dangerous condition in which brain inflammation results from the virus that causes cold sores. Isabel, who was diagnosed at 13 months old, had a stroke as a result, which caused a brain injury. She has epilepsy, a hearing impairment, is nonverbal (but communicates with an assistive device), a developmental delay, and autism.

"She is strong willed and independent, she is absolutely perfect in our eyes and the sunshine in our lives," her parents told Same But Different.

8. Percy, who has Prader-Willi syndrome

Around the world, between 1 in 10,000 and 1 in 30,000 people are born with Prader-Willi syndrome, a genetic condition. As a baby, these individuals usually have weak muscle tone, feeding difficulties, poor growth, and delayed development. As they grow, they develop an insatiable appetite that leads to obesity and they often experience intellectual and learning disabilities as well as behavioral issues.

Percy's parents are preparing for the challenges his extreme appetite will bring by moving all food to a locked portion of their home and by installing a surveillance system so that if he tries to leave the house in search of food, they'll know. "{W]hen we were given his diagnosis we were devastated but in some strange way a bit relieved as his diagnosis could have been so much worse," his parents told Same But Different.

Hughes has found that even though these children's diseases are different, their families can find strength by supporting one another.

"[U]ltimately we all share the same fears, difficulties, and challenges no matter what the rare disease is," she told Upworthy.

And for the rest of the world, she's hoping to help others understand that medical differences aren't reasons to stare, mistreat, or make assumptions.

"If everyone could know one really important thing about rare diseases, it would be that everyone deserves kindness," Hughes said. And by shining light on the children, their conditions, and their personalities, she's helping educate others and make the world a better place — for all of us.

Planet

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Health

We asked people what they really enjoy that others can't understand. One answer dominated.

Interestingly, research shows that these people are particularly unlikely to be neurotic.

Canva

Some people really enjoy being alone.

We recently asked our Upworthy audience on Facebook, "What's something that you really enjoy that other people can't seem to understand?" and over 1,700 people weighed in. Some people shared things like housework, cleaning and laundry, which a lot of people see as chores. Others shared different puzzles or forms of art they like doing, and still others shared things like long car rides or grocery shopping.

But one answer dominated the list of responses. It came in various wordings, but by far the most common answer to the question was "silent solitude." Here are a few examples:

"Feeling perfectly content, when I’m all alone."

"Being home. Alone. In silence."

"That I enjoy being alone and my soul is at peace in the silence. I don't need to be around others to feel content, and it takes me days to recharge from being overstimulated after having an eventful day surrounded by others."

"Enjoying your own company. Being alone isn’t isolating oneself. It’s intentional peace and healthy… especially for deep feelers/thinkers."

Spending time by ourselves is something some of us relish, while some of us hate being alone. Naturally, this points to the common theory of introversion vs. extraversion, but in some ways, that's overly simplistic. Even the most peopley people among us can enjoy some quality alone time, and not all introverts see time alone as truly enjoyable. (It might be necessary for an introvert's well-being, but not necessarily something they truly revel in.)

Interesting, studies have found that people who enjoy being alone are not any more or less extraverted than those who don't, though they do tend to be less "sociable." They are also less likely to be neurotic (tense, moody, worrying types) than the generally population and more likely to be open-minded. Those characteristics are the opposite of what social norms often tell us about people who want to be alone.

"If our stereotypes about people who like being alone were true, then we should find that they are neurotic and closed-minded. In fact, just the opposite is true," writes Bella DePaulo, PhD.

There may be lots of reasons some people like to spend time by themselves while others don't. We are naturally social creatures and need social interaction, but some of us find ourselves overstimulated by being around other people all the time. On the flip side, some people find being alone not just unenjoyable, but extremely uncomfortable, which can be a problem.

"Ideally, we should be comfortable with ourselves, alone or with others," writes psychologist Tara Well Ph.D.. "If you are uncomfortable being alone, it means you are uncomfortable being with yourself without distraction, engagement, or affirmation from others. This can be a liability in life. If you cannot be alone, you may stay in situations or make life choices that aren’t good for you in the long run, like staying in a job or a relationship, mainly because you can’t tolerate being alone while transitioning to a better situation."

Dr. Well also points out that people can make the most of their alone time, even if it's not something they naturally enjoy. One way is to make it purposeful, setting aside a little time daily to write in a journal, meditate, go for a walk or otherwise engage your mind and body in some form of reflection. Another is to pay attention to self-judgments that might make alone time uncomfortable and challenge them with some compassionate confrontation and counteraction with positive thoughts about yourself.

Alone time can be refreshing and rewarding, especially if it's something you naturally crave. Some people even like to take themselves out on dates or enjoy traveling by themselves. That kind of self-care can be just as important as connecting with others for our overall health and well-being. Being alone doesn't mean being a loner and it doesn't mean being lonely. Some of us genuinely like having quality time with ourselves, whether it makes sense to other people or not.


This article originally appeared last year.

Cat discovering owner's pregnant belly.

Can animals tell if you're pregnant? That question has been asked countless times without a scientifically proven answer, but some people swear their pets started behave differently around them when they're expecting. Some cats or dogs get more snuggly, some get more protective, some get more territorial, but it's not uncommon for people to report their pets acting notably differently when there's a human baby on the way.

A woman captured a sweet moment of her cat interacting with her pregnant belly, almost as if it just realized she had a baby inside it. At first, the kitty looks over at her rubbing her belly with its curiosity clearly piqued. Gently moving towards her, it starts sniffing her belly button, peering into it, then oh-so-gently touching it with its paw.

"Oh my god," the woman whispers. "I'm literally crying."

People loved seeing the cat's "discovery" and shared some of their own experiences with pets and pregnancy.

"My old boy Leon knew ❤️ he laid on my belly every night. He waited to meet his baby brother and then crossed the rainbow bridge 🌈"

"My cat would sleep on or against my pregnant belly, but as soon as the baby kicked she’d wake up and look at my belly in annoyance. 😂"

"My Eddie used to sit on my belly every night -- until I became pregnant, and then he sat close by , but never on my belly. He knew before I did!"

"My cat wouldn't leave my side after my csection. He was stuck to me and baby LIKE GLUE. He never cuddles so much. He was ON ME. Turns out, I had complications, and needed to be rehospitalized. I feel like he knew something wasn't right🥹 I am forever grateful!"

"My cat Minou used to always cuddle me while I was pregnant. He had never been a cuddle before or after."

"My "soul cat" Isabelle would curl up and sleep on my pregnant belly. She only got mad once because she was kicked and acted like I did it 😊"

"Cats know. They know when someone is pregnant and even when someone is ill or about to die. We underestimate them."

Do they really know? The verdict is out on that question in terms of definitive research, but there are some indications that they could. Hormonal changes during pregnancy may result in slight changes in your smell, which cats' incredibly strong olfactory senses might pick up. Cats are also super sensitive to changes in their environment, so their human's growing belly and behavioral changes as they prepare for a baby's arrival may also signal to them that something new is afoot. Whether that means they actually understand that a new human is on the way is an entirely different question, and unfortunately we can't get into the mind of our feline friends.


In Love Cat GIFGiphy

As far as when someone is ill or about to die, we've seen at least one cat who seemed to have a sense for when people were close to death. Oscar "the Hospice cat" lived in the Steere House Nursing and Rehabilitation Center in Providence, Rhode Island, as a therapy cat, but caregivers began to notice a pattern. Once in a while, Oscar would start spending a lot of time in a specific resident's room.

"We would eventually find out after he did this several times that the people he was staying with were usually the next ones to go," Dr. David Dosa shared with Crossroad Hospice. "One death occurred, then two deaths and ultimately he hit about 20 or 30 deaths in a row at which point everybody started to say, ‘Wow, this is something quite unique.’”

In fact, workers at the center began calling people's families if Oscar started spending a lot of time with them, as it was so often a sign that the person would pass soon.

There's a lot we don't know about what animals can and cannot sense, but that doesn't change the sweetness of seeing a cat peer into and paw at the belly button of a pregnant woman. What a lucky baby.

A happy mother and her smiling child.

Parents of newborns know they are in the middle of a joyous and stressful era. But far too often, the people they run into choose to frame things negatively when talking to them about their young child. They’ll say things like, “Don’t worry, it gets better” or “Boy, do you have your hands full.”

That’s why Steph Morrison's video on TikTok touched so many hearts. It’s about the fantastic things that can happen when people choose to see things in a positive light instead of a negative one.

“The sweetest thing just happened,” Morrison begins in her video. “I was just finishing my walk and we were just pulling down our street and this old man, he stopped so we could walk by because we’ve got the double-wide stroller that takes up the whole space, and he goes ‘Wow! You’re going to have a lot of fun.’"

The comment blindsided Morrison because it reframed how she looks at being a parent.

@_stephmorrison_

I never would have guessed what the man would say nor did I ever predict tears would roll down my face like they did. Thankful for this sweet glimmer from God 🫶🏼✨ #momspiration #momsoftiktok #momsover30 #quotesforyou #momquotes #postpartumjourney #postpartumlife #happywords #happinessbegins #creatorsearchinsights

“I don’t know why I’m getting emotional telling you now. But most people say, ‘You’ve got your hands full’ and it’s my biggest pet peeve, but he was so sweet and I could, like, see the memories flash through his eyeballs as he said that to me: ‘You’re going to have a lot of fun.’”

“Like, dang! That’s the type of vibe and energy I’m going to bring to motherhood,” she continued. “I was having a really great time with the kids already, so I don’t know why I’m crying while telling you this. But if you’re a mother out there, I hope you’re having a lot of fun, too, because why not?”

Everyone knows that parenting can be hard. But it’s also filled with joy, laughter, hope, possibilities and new experiences. The elderly man’s comments were a great reminder to Morrison and her followers to focus on the joy and possibilities of being a parent instead of the challenges and hard work.



The video struck a chord with mothers in the comments who shared similar experiences.

“An older man in the grocery store stopped me when my son was 8 months old and said, ‘Young enough to still talk to the angels, put in a good word for me!’” Rachel wrote. “My only son is 7 months old. I can’t have any more kids due to life-threatening complications at birth. The other day, a man said to me, ‘He gets to have you all to himself. Isn’t that so special?’” Happy_Gilmoree added.

CaitlinPrice25 hit the nail on the head. “Society makes us feel like kids are a burden,” she wrote. “Just a little change of perspective can make all the difference.”

A positive mindset can make life much easier for parents, but it’s also great for their children. Children look to their parents and model their behavior; those with a positive attitude are likely to raise happy, optimistic children. “A mother’s ability to model positivity becomes a powerful tool in shaping a child’s character, fostering qualities such as kindness, compassion, and a positive outlook on life,” The Motherhood Center in Houston, Texas, writes.

The story also reminds everyone, whether they are parents or not, of the importance of leading with positivity when dealing with others. The man could have said something cliché such as “I hope you’re getting enough sleep,” but instead, he reminded Morrison of the joy of parenting, and she made his remark her north star. That’s the power of positivity.

This article originally appeared last year.

Chaplain J.S. Park and a man on his deathbed.

The regrets of the dying are tragedies for those who are leaving this world. However, for the living, they can be valuable lessons on how to live a happy and meaningful life that benefits others. That way, when we reach the end, we can do so peacefully, knowing that we got the most out of this one lifetime.

Joon Park, who goes by J.S. Park on social media, is a chaplain at Tampa General Hospital who describes himself as a “grief catcher” and is the author of “As Long as You Need: Permission to Grieve.” He has sat at the bedsides of thousands of people who are in the process of passing away, and that’s given him a very unique perspective on life. He knows the greatest gift to give to the dying is listening so they can feel heard before they leave this world.

What’s the biggest regret of the dying?

He told CNN that in his conversations with the dying, there is one regret that he hears the most: “I only did what everyone else wanted, not what I wanted.”

“Many of us near the end realize we were not able to fully be ourselves in life – we had to hide to survive,” he continued. “It was not always our fault. Sometimes, our resources, the systems, and culture around us did not allow us to. My hope is always to fully see and hear this patient, who is now finally free. ”

dying, hospice, j.s. parkA man in the final moments of his life.via Canva/Photos

It must feel terrible to walk through life feeling like a square peg in a round hole, having a job you don’t like, a spouse who doesn’t understand you, or having to live up to standards that you didn’t create. It’s upsetting that many people experience this, and Park’s advice reminds us to ask ourselves a serious question: Am I living my life or the life someone else has chosen for me?

Park said that people's most common fear towards the end of their lives is whether their loved ones will be okay after they’re gone.

“Will my loved ones be OK without me? Who will look after Mom? Who will take my dad to the doctor? How will my son and daughter get along without me? Even my patients who are most at peace with their dying are still anxious about how their own death will affect their family,” he says. The fear shows that even when people are ready to leave this world, they never stop caring for those closest to them.

“This is almost an empathic anticipatory grief, experiencing the grief of the other person’s future loss. We are so connected that often we worry about how other people will be affected by our own death,” Park said.


How to know if you're living your own life

How do we know if we are living our own life and not that of others? It’s a big question, but according to Follow Your Own Rythm, a great place to start is to stop letting fear or society’s expectations dictate your path. Instead, express yourself freely, follow your passions, live by your core values, and spend time with yourself, touching base with your thoughts and feelings. You’ll know you’re living your life when it begins to feel more harmonious and authentic.

mage from Everyday Feminism, used with permission by creator Alli Kirkham.

There are many different scenarios where consent is necessary.

In 2013, Zerlina Maxwell ignited a firestorm of controversy when she strongly recommended we stop telling women how to not get raped.

Here are her words, from the transcript of her appearance on Sean Hannity's show:

"I don't think that we should be telling women anything. I think we should be telling men not to rape women and start the conversation there with prevention."

So essentially—instead of teaching women how to avoid rape, let's raise boys specifically to not rape.

There was a lot of ire raised from that idea. Maxwell was on the receiving end of a deluge of online harassment and threats because of her ideas. The backlash was egregious, but sadly, it's nothing new. Such reactions are sadly common for outspoken women on the Internet.

People assumed it meant she was labeling all boys as potential rapists or that every man has a rape-monster he carries inside him unless we quell it from the beginning.

But the truth is most of the rapes women experience are perpetrated by people they know and trust. So, fully educating boys during their formative years about what constitutes consent and why it's important to practice explicitly asking for consent could potentially eradicate a large swath of acquaintance rape. It's not a condemnation on their character or gender, but an extra set of tools to help young men approach sex without damaging themselves or anyone else.

screenshot from Hannity show

Zerlina Maxwell is interviewed on "Hannity."

Image from “Hannity."

But what does teaching boys about consent really look like in action?

Well, there's the viral letter I wrote to my teen titled "Son, It's Okay If You Don't Get Laid Tonight" explaining his responsibility in the matter. I wanted to show by example that Maxwell's words weren't about shaming or blaming boys who'd done nothing wrong yet, but about giving them a road map to navigate their sexual encounters ahead.

There are also rape prevention campaigns on many college campuses, aiming to reach young men right at the heart of where acquaintance rape is so prevalent. The 2014 movement, "It's On Us," was backed by The White House and widely welcomed by many young men.

And then there are creative endeavors to find the right metaphors and combination of words to get people to shake off their acceptance of cultural norms and see rape culture clearly.

This is brilliant:

comics that illustrate consent

A comic about different types of consent.

Image from Everyday Feminism, used with permission by creator Alli Kirkham.

There you have it. Seven comparisons that anyone can use to show how simple and logical the idea of consent really is. Consent culture is on its way because more and more people are sharing these ideas and getting people to think critically. How can we not share an idea whose time has come?

This article originally appeared ten years ago.