When Jennifer Hiles was born in South Dakota in 1987, she had what appeared to be a reddish birthmark between her eyebrows and across her nose.
Her parents didn't think much of it, but soon, they realized that ordinary-looking birthmark was so much more serious than they could have ever imagined.
It started when Hiles was only 3 months old. She started bleeding heavily from her nose and mouth. Her terrified parents rushed her to the hospital, but doctors couldn't figure out why the bleeding was happening.
Over the next few months, she received multiple transfusions to replace the blood she was losing. At 2 years old, she had several operations to stop the bleeding. None were successful.
It wasn't hemophilia, a condition in which blood can't clot, though. When Hiles turned 8, the birthmark between her eyes and across her face began to swell, causing large masses to form.
It turned out that Hiles has arteriovenous malformation, or AVM, a condition in which the veins and arteries are connected and tangled together in abnormal ways. AVM can manifest with mild or no symptoms, and often does, but in Hiles' case, her symptoms were severe.
Having a rare condition is never easy, but it's especially hard when it causes a change in appearance that others might not understand.
Luckily, many people are raising awareness about these conditions and, like model Meagan Barnard, empowering those who might be ashamed of their appearance.
Read on to learn more about Hiles' story, and to learn how you can help her and her family.
NOTE: Some of the following photos show the aftermath of surgery, which may be upsetting to some.
[H/T: 22 Words]
When Jennifer Hiles was born, her parents thought the pink birthmark on her forehead, nose, and cheek was just that, a birthmark.
What they didn't know was that it was actually the early signs of something much more serious.
When she started bleeding inexplicably from her nose and mouth at 3 months old, her parents were terrified and doctors were baffled. They gave her transfusions, and when she was 2, she underwent several unsuccessful surgeries to stem the bleeding.
But nothing worked.
When she was 8, the "birthmark" began to swell, causing her to require laser treatments for her skin.
But the swelling and bleeding continued. It also caused her gums to swell, which led to tooth loss. Even brushing her teeth could cause her to bleed to death.
It wasn't until 2000, when she was 13, that doctors diagnosed her with arteriovenous malformation, or AVM. This is a condition in which the veins and arteries are "tangled" and connected in abnormal ways.
Among people with AVM, 88 percent show no symptoms and experience no issues, but Hiles' case was severe, and potentially life-threatening.
Hiles started having surgeries at the age of 15, and it would be a long road ahead.
But she wouldn't go alone. Hiles has been with her husband, Dustin Van Overschelde, for 11 years.
Despite the risk of death, Hiles braved two successful pregnancies with Van Overschelde, and today is the proud mom of two little girls, Marlina Sky and Kiah Bliss, now 5 and 4 years old, respectively.
However, she's had a hard time when it comes to working.
Sometimes, it's because the frequent nosebleeds and sensitivity made it too difficult — and sometimes, cruelly, employers told her that her appearance would be off-putting to customers.
As a result, Hiles has been a stay-at-home mom since 2013.
While she tried to downplay her condition for the sake of her daughters, her worsening condition made her husband prompt her to seek care.
And she did. She ended up working with Dr. Waner at the Vascular Birthmark Center of New York.
Her surgeries include getting tissue expanders. They look alarming, but these expandable implants are stretching Hiles' skin, making more of it so that it can be used in reconstructive surgery.
With the help of Dr. Maurice Khosh, a plastic surgeon, Hiles began a series of surgeries to clear up her AVM and reduce the swelling of her face.
The surgery was a major one, but Hiles was more than ready to face it.
"I just want to not be shy," she says. "I want to be who I am. I don't want to look perfect, I just want to look normal."
And while the surgery and everything leading up to it is harrowing, her family is by her side.
Hiles had her surgeries in May, which not only included removing all of the tissue affected by AVM, but also included removing her nose and building her a new one using one of her ribs.
Click the image below to see the results. Please be warned that there is some scarring, but it's the reconstruction of Hiles' face, and it's really amazing!
The surgeries were successful, but AVM, while not cancer, can come back in the same way cancer can, and continue causing problems.
So while she's accomplished a lot, she still has much more to do.
Hiles hopes that her surgeries will make it easier for her to go out in public, and not have to worry about blood loss or the stares of others.
You can help Hiles and her family get through this by donating to their GoFundMe page, where you can also learn more about AVM.
You can also keep up with Hiles on her YouTube channel and Facebook.
To learn more about AVM, be sure to watch the video below — and please SHARE her story to help Hiles on her journey!
