Nick’s Story written by his mom:

“Nicholas was born on May 20, 1996, with Oromandibular Limb hypogenesis syndrome, or Hanhart syndrome. Infants having this condition can suffer from a spectrum of disorders that include lack of limbs, heart and kidney defects, and gastrointestinal disorders. This condition occurs once in 500,000 births. Somewhere between the 56th, something goes awry. Experts say the cause is unknown. Only 14 children have been born with this syndrome in the country. Most die because such babies often and on the 59th day of a baby’s development have deformed hearts, lungs, and digestive systems.

Nicholas was born without legs and one arm is a stump below the shoulder. The other arm is normal but has a hand with only one finger. In all other ways he is healthy and normal.

Nicholas is our blessing. He is 16 years old and has inspired everyone he comes into contact with. He is surrounded by his family who love him very much. He has 2 sisters, Marisa 28 and Meghan 22. A brother Mike 25, a brother-in-law Joe and sister in law Jamie. He is also an uncle to Sophia 6, Joey 3 1⁄2, Trevor 6 and Taven 3 years.”

Nicholas is a High Honors student at Central Regional High School where he will be a junior in September. Nick was a member of the High School Bowling team and looks forward to wrestling next year. Nick is a well-rounded young man who refuses to set any limits to what he can do. Keeping up with his many friends, Nick plays baseball, football, skate boarding and Frisbee. Nick loves the outdoors where he can swim, scuba dive and rides his bike; he’s also an accomplished hunter and loves to fish. Nick is a typical teenager who plays X Box – he was ranked 3rd in the world for Gears of War, you can view his gamer tag on-line as Chin FTW x 732. You can also view him on YouTube by searching nicksanto534, where he has posted many of his videos, some which are titled Nicks point of view. Nick has also become somewhat of a star On VINE with over 8,000,000 followers well and you know about the story with the walking dead.”

As Nick’s parents, we have been approached by many people saying what a great job we have done raising him, but we’ve done nothing more than treat him the same as our other children, support him in his interests, praise him at his accomplishments, teach him to be respectful and to know there are consequences for unacceptable behavior. His siblings treat him no different and show him no special treatment.”


Nick Santonastasso is not only a medical miracle, he has grown to be a successful inspirational keynote speaker, internationally known bodybuilder and fitness model and an author.

BOOK: Victim to Victor: How to Overcome the Victim Mentality to Live the Life You Love

Like this: