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Mea O.

One girl's fight against the sun.

When you think of the sun, it’s typically in the best connotations possible.

Just think of all the phrases that come to mind: sunny days, fun in the sun, sunrise, sunsets, the sun will come out tomorrow.  The list goes on and on.

Even in cartoons, the sun is often drawn with a smiley face. It’s always so, well, happy.

But for some kids like 11-year-old Mea, the sun doesn’t equate to happy days outside. In fact, exposure to its rays could come with major consequences – and much worse than just a sunburn.

Mea was in second grade when her parents noticed something unusual.

“She had been complaining about a stomachache and had a rash on her belly, but she’s our youngest of four kids, so we were pretty used to hearing or seeing things like that,” explained Mea’s mom. 

“But on Valentine’s Day in 2021, Mea and her dad went on a daddy-daughter date, and afterward, he wanted to take her out for ice cream, but she said she didn’t want it. We knew then that something was wrong.”

Because of the pandemic, Mea’s pediatrician wasn’t seeing patients in person, but she kept deteriorating. They tried ruling things out like switching her laundry detergent and eliminating some foods, but nothing seemed to work. 

Mea’s dad, Joe, has been a firefighter for more than 20 years, and he began paying close attention to his daughter’s symptoms. When she got bumps along her fingers and began to eat much less than normal, that was it for him.

The day her pediatrician began seeing patients in person again, Mea’s mom drove her there straight away. The doctor met them in the parking lot and said, “You need to go straight to the children’s hospital.”

To make matters worse, Joe got in a car accident while talking their older kids to school. Thankfully, no one was seriously injured, but it worsened an already unsettling day. 

Mea was admitted to the children’s hospital and the doctor said, “This is weird, and I’ve never seen this in person before, but during my medical boards, I saw a condition that looks like Mea’s symptoms called Juvenile Dermatomyositis.”

The hospital spent the next week running tests while Mea’s parents tried to connect with specialists, but they were fortunate that the pediatrician had an inkling.

“Our physician pointed us in the right direction and it made all the difference,” Joe explained. “Later, we talked to other parents who struggled for years before getting a diagnosis. Mea couldn’t lift her head off a pillow or lift her arms at that point. She could only drink and eat 3-4oz of food or water daily. If that had gone on for years, I just can’t think about what that would have looked like. She had deteriorated that much just over a few months – it was scary.”

Juvenile dermatomyositis is rare and not well known. A physician at the National Institute of Health has been researching it for nearly two decades, but there’s not a lot of information because it’s ethically not possible to study children. 

Because their medical center is a teaching hospital, they bring in all the students and interns so they can take a look at Mea, because her symptoms are textbook. 

“To be 11 years old and have people poking and staring at you must be a lot, but she’s willing to do it,” Joe explained. “We’re hoping that if someone else has similar symptoms, Mea’s experience will be able to get them help even quicker.”

Juvenile dermatomyositis is essentially an autoimmune disease that attacks skin and muscle tissue. There are different ways it manifests, but Mea’s version attacks both pretty significantly. 

For her skin, she can’t be in UV rays and develops a heliotrope rash. The muscle disease makes it hard for her to move, run, or play outside, and her digestive system is impacted. 

“It’s like trying to drive a car without power steering,” Joe explained. “Everything takes more effort.”

Scientists are still unsure how juvenile dermatomyositis works, and they can’t tell them what the future will look like either. They don’t know if it’s environmental or genetic. But they do know that UV rays trigger symptoms and it all starts cascading down from there. 

The risk of sun exposure and UV rays has had the most dramatic impact on their lives. If Mea rides in the car, the sun will hit her face through the window and she’ll start to get a purple rash on her cheeks and temple.

*We’ve become a nocturnal family because it’s easier for her at night. So we go to the zoo in the evening or look for pools with nighttime hours,” they shared. “We use an app that tells us what the UV is at so we know what’s safe for her. (Anything 3 and under is pretty good). Mea, her teacher, and even a few of her friends have downloaded the app so they can help determine if it’s safe for her or not.”

Living in the Southwest certainly complicates things. 

“UV protection for her was our top priority,” Joe said. “I didn’t know that could come in through the windows, because I honestly wasn’t paying attention before this. Our house is full of windows and it feels like the sun is always up, but we wanted her to be able to move freely around the house if we could protect her a little more. 

“In the summer, she spends all of her time inside. It’s not safe for her to do any summer activities. Frankly, even running to the store can cause her disease process to cascade. At those UV rates, it’s too dangerous. We do morning and night travel and that’s about it. But if our house isn’t safe either, what’s the point?”

In the last few years, every aspect of Mea’s life has changed dramatically. She was a kid who loved to run, play outside, and compete in sports. She liked to spend time with her friends walking around the neighborhood or hanging out at the pool. For the most part, those things just aren’t safe for her anymore. 

“I just want to run and play with the other kids,” Mea said.

We couldn’t let Mea spend her life indoors or out in the dark. So thanks to the support of our monthly donors, we funded UV protective windows for their home for a total impact of $36,600

Now, she can sit by the window in her room and listen to music without worrying about getting a rash on her cheek. She can hang out in the living room with her parents and siblings and not be scared of the consequences. She can keep making jewelry, bath soaps, lip balms, and other creative things she’s learned since she was diagnosed. Feeling safe at home is a big deal, and we’re so glad to be a small part of it. 

“We’re super grateful and appreciative of you guys and your mission in general,” said her mom. “Not even with just rare diseases but supporting first responders. Those are both big parts of our lives, obviously. I hope you know how important your work is to people.”

Spoken like the true first responder family they are, Mea and her parents wanted to make sure anyone reading this who needed resources on this condition could find some more information or resources through the JDM Foundation

We told them we’d be glad to share.

And for all the donors out there reading this, thanks for all you’ve done to make this grant possible for Mea and her family. If you’d like to join us in making the world 10% happier for rare medical families, first responders, or the military and veteran community, please become a monthly subscriber or make a one-time donation. A new day is always on the horizon, and we’re ready to be there for the next person in need. DONATE HERE.

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