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.

More

Disney has come under fire for problematic portrayals of non-white and non-western cultures in many of its older movies. They aren't the only one, of course, but since their movies are an iconic part of most American kids' childhoods, Disney's messaging holds a lot of power.

Fortunately, that power can be used for good, and Disney can serve as an example to other companies if they learn from their mistakes, account for their misdeeds, and do the right thing going forward. Without getting too many hopes up, it appears that the entertainment giant may have actually done just that with the new Frozen II film.

According to NOW Toronto, the producers of Frozen II have entered into a contract with the Sámi people—the Indigenous people of the Scandinavian regions—to ensure that they portray the culture with respect.

RELATED: This fascinating comic explains why we shouldn't use some Native American designs.

Though there was not a direct portrayal of the Sámi in the first Frozen movie, the choral chant that opens the film was inspired by an ancient Sámi vocal tradition. In addition, the clothing worn by Kristoff closely resembled what a Sámi reindeer herder would wear. The inclusion of these elements of Sámi culture with no context or acknowledgement sparked conversations about cultural appropriation and erasure on social media.

Frozen II features Indigenous culture much more directly, and even addressed the issue of Indigenous erasure. Filmmakers Jennifer Lee and Chris Buck, along with producer Peter Del Vecho, consulted with experts on how to do that respectfully—the experts, of course, being the Sámi people themselves.

Sámi leaders met with Disney producer Peter Del Vecho in September 2019.Sámediggi Sametinget/Flickr

The Sámi parliaments of Norway, Sweden and Finland, and the non-governmental Saami Council reached out to the filmmakers when they found out their culture would be highlighted in the film. They formed a Sámi expert advisory group, called Verddet, to assist filmmakers in with how to accurately and respectfully portray Sámi culture, history, and society.

In a contract signed by Walt Disney Animation Studios and Sámi leaders, the Sámi stated their position that "their collective and individual culture, including aesthetic elements, music, language, stories, histories, and other traditional cultural expressions are property that belong to the Sámi," and "that to adequately respect the rights that the Sámi have to and in their culture, it is necessary to ensure sensitivity, allow for free, prior, and informed consent, and ensure that adequate benefit sharing is employed."

RELATED: This aboriginal Australian used kindness and tea to trump the racism he overheard.

Disney agreed to work with the advisory group, to produce a version of Frozen II in one Sámi language, as well as to "pursue cross-learning opportunities" and "arrange for contributions back to the Sámi society."

Anne Lájla Utsi, managing director at the International Sámi Film Institute, was part of the Verddet advisory group. She told NOW, "This is a good example of how a big, international company like Disney acknowledges the fact that we own our own culture and stories. It hasn't happened before."

"Disney's team really wanted to make it right," said Utsi. "They didn't want to make any mistakes or hurt anybody. We felt that they took it seriously. And the film shows that. We in Verddet are truly proud of this collaboration."

Sounds like you've done well this time, Disney. Let's hope such cultural sensitivity and collaboration continues, and that other filmmakers and production companies will follow suit.

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