4-year-old born with rare skin condition becomes model so she can redefine beauty for other kids with differences
Four years ago, Angie Foy went to the local hospital to give birth to her third child. Although the baby was coming a month ahead of schedule, she was assured there was nothing out of the ordinary.
A short time later, the emergency C-section was performed without issue, and Angie’s husband was told to get his camera ready. As the doctor held the delivered child, however, his expression quickly changed.
“Everything just stopped,” said Angie. “As soon as I saw the look on his face I knew something was wrong. I can’t explain it, but I just knew it. It was dead silent.”
Angie didn’t even get to hold her new baby as doctors whisked her daughter out of the room. It wasn’t until later until she was told the full extent of the issue.
Angie’s new daughter, Harper, was born with what is known as Harlequin Ichthyosis (HI), a condition that covers the entire body in a thick, hard, armor-like encasing.
The casing is so tight that it threatened to cut off blood flow to all of her extremities. Occurring in only about 1 in every 500,000 children, children are only given a 50% chance of survival.
“The doctor’s honestly had never seen what Harper had,” said Angie. “We had no idea this would be our story. All through the pregnancy, through the ultrasounds, everything was fine. It was a total shock.”
Time was of the essence. If corrective actions were not taken quickly, there was a strong possibility she could lose all of her limbs.
In fact, it was a minor miracle Harper could even breathe; the only place on her body that was not covered was on her ribcages, which gave her little lungs and heart just enough room to function.
Harper was immediately transferred to Seattle Children’s Hospital. Her first surgery involved cutting a really thin line around her body to relieve the pressure, which was done without complete sedation due to the dangers of putting an infant to sleep.
Incredibly, Harper managed to keep her hands and feet, and four months and multiple follow-up surgeries later, she was cleared to go home.
But not before getting to meet Seattle Seahawks quarterback Russell Wilson and linebacker Bobby Wagner. To this day, Harper is a die-hard Seahawks fan and hopes to meet them again so she can be old enough remember it!
The transition to home life wasn’t easy. “For the first couple of years, I was a walking zombie,” said Angie. “She had a feeding tube, and sometimes it could get stuck and go into a lung if you’re not careful inserting it. It took everything we had just to keep her alive. But every day that was challenge made me more confident that she was here for a reason.”
Today, Harper’s condition requires daily skincare. Her regimen includes three baths a day and the application of Aquaphor on her body every few hours or risk infection. Despite the difficulties, however, Harper is otherwise a normal, wonderful four year-old child.
“She’s made me a better person,” said Angie. “She’s just so infectious and so happy, and she just radiates that to everyone she meets. She just blossomed and has this huge personality.”
It was this personality that caught the attention of a local modeling agency. “I submitted a few pictures, and they wrote back wanting to know her story,” said Angie. “It was all about timing. The modeling industry seems to be moving toward people who look different, and Harper’s story seemed like an opportunity to be an inspiration to a lot of kids, to hold their flag.”
Angie hopes that Harper’s new calling to help others find their own voice, and perhaps help others view those who are different in a new light. “Sometimes, when we go out and people just stare, and I don’t really get the chance to talk to them,” said Angie. “But we’re embracing this. We are trying to redefine beauty.”
To follow Harper on her journey, you can find her here on Instagram.