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Woman opens up about rare form of dwarfism, bone-lengthening surgeries in new memoir

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    Tiffanie and her husband, Lance Corporal Eric A. Gabrielse, on their wedding day (Photos courtesy of Tiffanie DiDonato)

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    Tiffanie sits on the couch with pins and fixators attached to her legs

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    Tiffanie and Eric with their son, Titan, who does not have diastrophic dysplasia. Tiffanie said because of her and her husband's combined histories (Eric is a Marine, who has been to Iraq), "our son was bound to be a force of nature."

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    The 'after' surgery photo, taken with Tiffanie's mother

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    Tiffanie on vacation at York Beach in Maine, age 6

Growing up in Tiffanie DiDonato’s house, 'can’t' was considered a four-letter word that was not allowed in her vocabulary.

“You could use any other word, (but) I wasn’t allowed to think I was different,” said DiDonato, who was born with diastrophic dysplasia, a rare form of dwarfism that caused her bones and joints to form irregularly, and made everyday tasks like brushing her own hair impossible.

VIDEO: Dr. Manny interviews Tiffanie

Diastrophic dysplasia is a genetic disorder caused by a gene mutation. It is estimated that about 1 in 100,000 newborns have it, according to U.S. National Library of Medicine. 

“I didn't want two or four inches; I wanted to see how far I could take it without putting a cap on it."

- Tiffanie DiDonato

DiDonato, 32, who lives near Camp Lejeune, N.C., with her husband, Eric, and son, Titan, recently released a book titled Dwarf: A Memoir, which details her life as a little person, and her decision to undergo controversial surgeries to lengthen her arms and legs.

DiDonato has had several surgeries throughout her life – her first one occurred at the age of two to correct a club foot. But, she had her first bone-lengthening surgery at the age of 8 – an excruciating ordeal that gave her two extra inches in her arms (so she could reach her ears) and two inches in her legs.

“They break the bone, although the doctor doesn’t like to use the word ‘break,’” DiDonato told FoxNews.com. “They cut the bone in half, then insert metal wires and rods. Those rods protrude, (and) stick out of the skin. You take a L-wrench and stick it in the hole and turn it counter-clockwise four times a day. And the fixator attached to the pins starts to move – 1 millimeter per day, so the initial cut that’s in the bone starts to get wider, the space grows and that’s where you get your height.”

DiDonato said the procedure itself wasn’t necessarily painful, but the daily exercising and stretching afterward was.

So, some people – including her own father – were puzzled when she decided she wanted to lengthen her bones again at the age of 15 in a series of procedures that would take her out of high school until graduation.

“I noticed such a huge difference when I was 8,” DiDonato said. “We’re talking about reaching doorknobs. I got stuck in the bathroom at school once because I couldn’t reach the door knob. I’ll never forget that moment.”

DiDonato, spurred by her mother’s ultra-confident attitude, realized she didn’t want to be held back in life. She didn’t want to be dependent on others to take care of her – and she didn’t want to be stigmatized; especially after a teacher told her she couldn’t participate in an extracurricular activity because she was “obviously a dwarf.”

That’s when DiDonato made the decision to find a doctor who would operate on her terms.

“I didn’t want two or four inches; I wanted to see how far I could take it without putting a cap on it,” she said.

A doctor at the University of Massachusetts agreed to help DiDonato – and she ultimately gained 10 more inches, bringing her total height to 4-feet, 10-inches tall.

It took about two years for DiDonato to grow and heal, but she ultimately walked across the stage to obtain her high school diploma, a goal she had set for herself. After, she set out for college, living on her own and joining a sorority.

The recovery wasn’t always easy, and there were times she second-guessed herself – like when the pain became so bad felt like she could die, or when her new legs wouldn’t get her to the bathroom in time.

“What did I get myself into?” DiDonato remembers thinking. “My mom didn’t let me have that mentality for long.”

Happily married, DiDonato said she had an easy pregnancy and is looking forward to having more kids. She said she has “good days and bad days,” but she won’t let the bad days define her. She and her husband plan to write a fiction book together, and she said she will write some children’s books, too.

When it comes to the surgery, which some people have criticized her for having, DiDonato said she would do it again in a heartbeat.

“The book is not just for those who are curious about dwarfism or for dwarves, but for everyone who has ever been told they can’t do something and then go on to do it anyway,” she said.