Rob Mendez was born without arms and legs because he has tetra-amelia syndrome, a disease that prevents limb growth in the womb.
The high school football coach was this year’s recipient of the ESPY 2019 Jimmy V Perseverance Award. Coach Rob Mendez coaches junior varsity football at Prospect High School, about 40 miles from Saratoga, California.
Tetra-amelia syndrome is an extremely rare disease. Oftentimes, Tetra-Amelia Syndrome causes stillborn births. Other times, a baby with the disease will be born but only live a few hours. People who live with the syndrome often have severe intellectual disabilities.
Many babies born with the syndrome have other severe malformations, such as of the face and head, nervous system, skeleton, heart and lungs, according to the U.S. National Library of Medicine.
Apart from being born without limbs, Rob Mendez was born a healthy baby. He learned from a young age to push himself beyond expectations. He told his football team a story of a time he was 9 years old. His dad, Rob Mendez Sr., put him on the stairs in the family home and told him to climb the steps. He figured out how to make his way up, using his chin to lift his body up the steps, ESPN reported.
He also has severe scoliosis, and often has neck pain because he uses his neck like a limb.
His story was made famous in an ESPN SportsCenter Feature in February, “Who Says I Can’t?”
The title got its name from Rob Mendez catch phrase. He also uses it as a rallying cry to pump up his team before a game.
“Who says I can’t?” he shouted to his team on the ESPN trailer.
“Nobody!” his team shouted back.
Here’s what you need to know:
1. Tetra-Amelia Syndrome Prevents The Growth Of All Four Limbs
Tetra-Amelia Syndrome is a genetic disorder which prevents proper embryonic development. A mutated gene prevents an embryo from growing limbs in the womb.
The disease got its name from a combination Greek words. “Tetra” refers to four limbs and “amelia” refers to formation before birth, according to The U.S. National Library of Medicine.
Often the underdevelopment is not limited to limbs. Sometimes lungs are underdeveloped, making breathing difficult or impossible. Other organs, such as the heart, may have severe malformations, along with the face, head, skeletal system and nervous system.
The disease is extremely rare. The U.S. National Library of Medicine said only a few families across the world have reported the syndrome.
Orpha, a portal for rare diseases, said fewer than 20 tetra-amelia patients have been identified. Most of them are of Middle Eastern descent.
Terta-amelia syndrome is inherited in an autosomal recessive pattern, meaning both parents have copies of the mutated gene which are passed down to the child. The parents do not have to exhibit any symptoms to carry the genetic abnormality.
Rob Mendez learned young how to adapt to the disease. He learned how to climb the steps at his childhood home when he was 9 years old. His father, Rob Mendez Sr., set him on the stairs and told him to climb them. He learned to use his chin to lift his body up the stairs, ESPN reported.
His family often lovingly pushed him to try new things. It was his older sister, Jackie who got him into football. One day, she put a video game controller under his neck. Soon, he learned how to push the buttons and learned to play Madden. His friends organized a 32-team tournament, and Mendez took second place.
2. The Disease Is Usually Fatal Before Birth
It is rare for a person with tetra-amelia syndrome to survive even until birth. Most babies with the disease are stillborn, or only live for a few days or hours. The condition often prevents other organs, such as the lungs or heart, from growing properly.
Some research shows tetra-amelia syndrome is caused by a genetic abnormality in the WNT3 gene, according to The U.S. National Library of Medicine. The gene is responsible for the formation of limbs and other systems in the body as an embryo develops. Because the syndrome is so rare, it is difficult to pinpoint an exact cause since the research pool is so small.
Rob Mendez’ parents learned their son wasn’t growing limbs in his mother’s eighth month of pregnancy, according to ESPN.
The disease is typically discovered through an ultrasound.
In most cases of the disease, babies are stillborn or only live a few hours or days.
3. The Disease Often Causes Other Malformations
Tetra-amelia syndrome often causes other severe malformations in addition to an absence of legs. These malformations often impact development of organs, making the disease fatal. The development often effects the heart, lungs or skeletal system. Lung development problems are common, making it difficult or impossible to breathe, according to U.S. National Library of Medicine.
If a person with the disease survives, they often have severe intellectual disabilities or other severe health problems, ESPN reported. Rob Mendez was born healthy aside from having no arms and legs.
He has severe scoliosis and suffers from chronic neck, back and shoulder pain.
“I use my neck like my arm,” Mendez told ESPN. “And the muscles in your neck are not supposed to be used that often. At the end of every day, I’m sore.”
He also retains heat 30 percent more than the average person, with no limbs to distribute his body heat.
4. Mendez Adapted To Overcome The Disease
Rob Mendez started in sports with adaptive skiing and learned to swim. As a child, his friends would tow him on skateboards and stuff a pillow in his shirt so he could be goalie in field hockey. He would referee his friend’s basketball games, he told ESPN.
Rob Mendez has turned down opportunities for prosthetic limbs, saying he would only consider it if he had children.
“There was one word my dad never liked — special,” Mendez told ESPN. “Special is bulls***. We are all special. The other kids are special, too. What the hell does that even mean? My dad would tell me, ‘You’re not special, Rob. You’re different. And different is not bad. Embrace it. Push the limits. And anyone who has a problem with that, prove them wrong.'”
He learned to write and draw using his mouth.
“I like the way I am, really,” he says. “It brings out the best in people. I’m in Las Vegas and there’s some guy stumbling drunk, looks like he was just in a fight. He sees me, and he stands up straight and pulls himself together so he can open the door for me. Things like that happen all the time. It gives me hope for the world.”
5. He Learned Football By Playing Video Games
Rob Mendez learned to play football with the Madden video games. With no arms, learning to play video games was a task in itself. He said his older sister, Jackie, put a game controller under his chin and encouraged him to learn to play. He soon learned to push the buttons with his chin. His friends organized a 32-team tournament, and he won 2nd place, he told ESPN.
He said he hates asking for help, and coaching football gives him an opportunity to help other people.
“In life, I feel like I’m always being helped,” he said. “They gave me the feeling of being the helper. They gave me a feeling of importance. And that’s special because sometimes in this world, on a day-to-day basis, I wish I could do more. And those kids gave me the feeling that I can do anything.”