Daughter Is Born With Rare Bone Condition. 17 Years Later, She Says Her Looks Don’t Define Her

by Emerald Pellot
Emerald Pellot graduated summa cum laude from New York University with a degree in Writing & Popular Culture. She worked as Senior Editor of College Candy for 2 years, covering feminism, popular culture, and college life before joining LittleThings in 2015. Based in New York City, Emerald covers a wide range of topics from human interest pieces to celebrity news.

Halle Hofman, from Star, Idaho, was born with a rare genetic condition called Pfeiffer syndrome that causes her bones to grow atypically. She has had to undergo 17 painful facial surgeries and 21 surgical procedures altogether.

The odds of being born with Pfeiffer syndrome are one in 300,000. In fact, Halle has only ever met one other person with the condition in her life: her father.

Although she has to deal with stares from strangers, the 17-year-old is more focused on being the best version of herself.

“I want people to know that looks don’t define the person — it is how you act and what you do,” Halle told Caters TV. “Pfeiffer syndrome has helped define who I am by helping me gain strength and courage and faith. Pfeiffer has really helped shape me into who I am.”

The condition has caused the family to frequently travel to Chicago for treatments. It has impacted her facial structure, along with the bones in her hands, feet, and knees.

“Throughout my life, dealing with surgeries has been hard. I think that is the hardest thing about Pfeiffer syndrome that I have to deal with, and I hate being down for a long time,” she said.

Nevertheless, her condition is expected to improve once she fully grows and develops. Halle has devoted her life to making a difference, not just by raising awareness for her own condition. She has traveled to Ghana with her parents to develop a children’s home there.

“Halle’s personal experiences give her instant credibility when she interacts with others who are suffering; she really does understand a lot of things that we may not,” said her father, Cory.

Halle started the blog Step Up Your Edge to inspire others to do good in the world and overcome challenges.

“I always try to remember the positive things in my life and I make Pfeiffer a positive thing in my life,” she says.

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