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Rare genetic disorder has required 17 year old to undergo 17 facial surgeries in her life time

This brave 17-year-old suffers from an rare genetic disorder that causes the bones in her skull to fuse prematurely, affecting the shape of her head and face.


As a result, Halle Hofman has had to undergo 17 painful and time-consuming facial surgeries in her lifetime.

According to the National Institute of Health’s Library of Medicine’s Genetics Home Reference, the chances of a child being born with Pfeiffer is one-in-one-hundred-thousand; others have reported the chances to be as high as one-in-three-hundred-thousand.

In Halle’s lifetime, the Hofman family have only come across one other individual with the disorder, Halle’s father, Cory, 50, said.

Despite the condition causing people on the street to stop and stare at her – something Halle admits used to make her very uncomfortable – the youngster hopes that her positive approach to dealing with the syndrome will inspire others.

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Halle, who lives in Star, Idaho, said: “I want people to know that looks don’t define the person – it is how you act and what you do.

“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.”

Due to Halle’s condition, the Hofman family have had to travel across America, mainly to Chicago, so that their daughter can undergo surgeries and check-ups at different points in her life.

As well as impacting an individual’s facial structure, Pfeiffer syndrome can also affect the bones in the hands and feet.

Halle has had to undergo four additional operations – two knee surgeries and two for hearing aid implants – due to the disorder.

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She said: “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.

“After a surgery I am pretty worn out.

“Recovery time is hard for me.”

Once Halle is fully grown, Pfeiffer will stop affecting her as it currently does, as her facial structure will, by then, be completely developed.

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However, despite the difficulties Pfeiffer has caused Halle during her formative years, she has embraced school and the friends she has made; she is currently a junior in high school.

Away from her studies, the Idaho resident is also involved in a lot of charity work – specifically Ghana Make a Difference, a non-profit organization that Cory and his wife, Stacey, 48, started to develop a children’s home in Ghana.

Halle has travelled to Africa for the past four years, documenting her work there on her Instagram account.

Cory said: “Her work there is incredibly sincere – and Halle is very strong, physically and emotionally.

“So, she has much to share in a place like Ghana.

“Also, 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.

“And others know this.”

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The 17-year-old’s hobbies include travelling, looking at new architecture, trying new food, and meeting new people.

Back in Idaho, Halle also maintains a blog, Step Up To Your Edge, where she writes positively about overcoming the challenges of living with Pfeiffer.

Going forward, the Hofmans plan to spend a year abroad, starting in August, with Ghana being their home base while they travel to other countries.

Halle, who will take a year out of school to go on the trip, hopes to become a photojournalist in the future and would like to continue her work as a motivational speaker and blogger.

She has one more surgery planned in late July, and from then on should need only eye surgeries, nothing mandatory to correct her facial shape.

Halle said: “Pfeiffer syndrome will always be a big part of my life.

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

“I have had 21 surgeries.

“I am almost to the finish line and I can’t wait.”

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