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.

Connections Academy

Wylee Mitchell is a senior at Nevada Connections Academy who started a t-shirt company to raise awareness for mental health.

True

Teens of today live in a totally different world than the one their parents grew up in. Not only do young people have access to technologies that previous generations barely dreamed of, but they're also constantly bombarded with information from the news and media.

Today’s youth are also living through a pandemic that has created an extra layer of difficulty to an already challenging age—and it has taken a toll on their mental health.

According to Mental Health America, nearly 14% of youths ages 12 to 17 experienced a major depressive episode in the past year. In a September 2020 survey of high schoolers by Active Minds, nearly 75% of respondents reported an increase in stress, anxiety, sadness and isolation during the first six months of the pandemic. And in a Pearson and Connections Academy survey of US parents, 66% said their child felt anxious or depressed during the pandemic.

However, the pandemic has only exacerbated youth mental health issues that were already happening before COVID-19.

“Many people associate our current mental health crisis with the pandemic,” says Morgan Champion, the head of counseling services for Connections Academy Schools. “In fact, the youth mental health crisis was alarming and on the rise before the pandemic. Today, the alarm continues.”

Mental Health America reports that most people who take the organization’s online mental health screening test are under 18. According to the American Psychiatric Association, about 50% of cases of mental illness begin by age 14, and the tendency to develop depression and bipolar disorder nearly doubles from age 13 to age 18.

Such statistics demand attention and action, which is why experts say destigmatizing mental health and talking about it is so important.

“Today we see more people talking about mental health openly—in a way that is more akin to physical health,” says Champion. She adds that mental health support for young people is being more widely promoted, and kids and teens have greater access to resources, from their school counselors to support organizations.

Parents are encouraging this support too. More than two-thirds of American parents believe children should be introduced to wellness and mental health awareness in primary or middle school, according to a new Global Learner Survey from Pearson. Since early intervention is key to helping young people manage their mental health, these changes are positive developments.

In addition, more and more people in the public eye are sharing their personal mental health experiences as well, which can help inspire young people to open up and seek out the help they need.

“Many celebrities and influencers have come forward with their mental health stories, which can normalize the conversation, and is helpful for younger generations to understand that they are not alone,” says Champion.

That’s one reason Connections Academy is hosting a series of virtual Emotional Fitness talks with Olympic athletes who are alums of the virtual school during Mental Health Awareness Month. These talks are free, open to the public and include relatable topics such as success and failure, leadership, empowerment and authenticity. For instance, on May 18, Olympic women’s ice hockey player Lyndsey Fry will speak on finding your own style of confidence, and on May 25, Olympic figure skater Karen Chen will share advice for keeping calm under pressure.

Family support plays a huge role as well. While the pandemic has been challenging in and of itself, it has actually helped families identify mental health struggles as they’ve spent more time together.

“Parents gained greater insight into their child’s behavior and moods, how they interact with peers and teachers,” says Champion. “For many parents this was eye-opening and revealed the need to focus on mental health.”

It’s not always easy to tell if a teen is dealing with normal emotional ups and downs or if they need extra help, but there are some warning signs caregivers can watch for.

“Being attuned to your child’s mood, affect, school performance, and relationships with friends or significant others can help you gauge whether you are dealing with teenage normalcy or something bigger,” Champion says. Depending on a child’s age, parents should be looking for the following signs, which may be co-occurring:

  • Perpetual depressed mood
  • Rocky friend relationships
  • Spending a lot of time alone and refusing to participate in daily activities
  • Too much or not enough sleep
  • Not eating a regular diet
  • Intense fear or anxiety
  • Drug or alcohol use
  • Suicidal ideation (talking about being a burden or giving away possessions) or plans

“You know your child best. If you are unsure if your child is having a rough time or if there is something more serious going on, it is best to reach out to a counselor or doctor to be sure,” says Champion. “Always err on the side of caution.”

If it appears a student does need help, what next? Talking to a school counselor can be a good first step, since they are easily accessible and free to visit.

“Just getting students to talk about their struggles with a trusted adult is huge,” says Champion. “When I meet with students and/or their families, I work with them to help identify the issues they are facing. I listen and recommend next steps, such as referring families to mental health resources in their local areas.”

Just as parents would take their child to a doctor for a sprained ankle, they shouldn’t be afraid to ask for help if a child is struggling mentally or emotionally. Parents also need to realize that they may not be able to help them on their own, no matter how much love and support they have to offer.

“That is a hard concept to accept when parents can feel solely responsible for their child’s welfare and well-being,” says Champion. “The adage still stands—it takes a village to raise a child. Be sure you are surrounding yourself and your child with a great support system to help tackle life’s many challenges.”

That village can include everyone from close family to local community members to public figures. Helping young people learn to manage their mental health is a gift we can all contribute to, one that will serve them for a lifetime.

Join athletes, Connections Academy and Upworthy for candid discussions on mental health during Mental Health Awareness Month. Learn more and find resources here.

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