The sky's the limit for Stephanie

By Donna McFadden

When LPC student Stephanie Mayhugh was born, she weighed 2 lbs. 7 ounces and could easily fit into the palm of her mother's hand. The doctors told her mother that, if Stephanie survived, she would be a vegetable for life. Several times, it came down to putting her on a respirator or letting her die, and the doctors' feelings were "why don't you just let her go?"

Today, at 31 inches tall and weighing 26 lbs., Stephanie is doing things that the rest of us take for granted, determined to be seen as an adult in spite of her size.

Rare genetic disorder

In spite of her determination, there's no escaping the physical limitations and setbacks she has faced. At age two, in order to prevent her tiny airways from collapsing, Stephanie underwent a tracheotomy, leaving her with no voice for three years. At age nine, back surgery was necessary to correct scoliosis. This year, after being legally blind for approximately six months, she had cataract surgery performed on both eyes.

Stephanie is currently awaiting a full hip replacement, but the hip surgery is stalled until Kaiser Permanente Hospital finds someone who is qualified to make a hip joint small enough to fit.

At the root of these problems is an extremely rare condition called Osteodysplastic Type II Majewski, a condition that has affecting only 20 people in the world.

Although Stephanie suffers from some learning delays, she is by no means retarded. Many of her learning delays can be attributed to lack of experience. Because of her small stature coupled with the medical problems she deals with, she is unable to venture out a lot on her own.

Until 1997, she had an aide with her on the school campus. Although she is a lifetime member of LPA (Little People of America), she has found that most of the members there tower over her and unfortunately, some of them treat her the very way they dislike being treated by people of normal height.

Courage in the face of adversity

Life treats her with no regard for the problems that she already faces. Within the space of a few years, Stephanie lost three friends and two family members to death, and then her parents went through a divorce. The combined experiences left her with feelings of anger, confusion, and sadness.

"At that time, I had gotten deep, and I mean really deep, into depression," said Stephanie. It was at this point that she discovered a talent for expressing herself in poetry and in song.

"God called me back from a place where it wasnot good to be. I was doing everything that used to make me happy; I couldn't figure out why [I was so unhappy.] I finally realized that I was stuck on who I [had been], instead of who I had become. I had to learn to accept the person I had become.

Stephanie has become a very likeable 21-year-old woman who wants nothing more than to be treated with the same respect, dignity and courtesy that we are expected to extend to most everyone.

She likes to be active, and enjoys line dancing and miniature golf. She is currently taking a computer class and a writing class. The tracheotomy prevents her from swimming, but thankfully, does not interfere with her singing. Stephanie writes and performs her songs with her church choir.

At Livermore High School, Stephanie was a percussionist in the marching band, driving a cart to keep up with the rest of the band.

"That was really fun for me, because it was one thing I could really do. Basically, this is my sport. I love music; I totally miss the marching band."

She says that, had she been bigger, she might have enjoyed playing soccer, but, emphatically, not football.

"I don't understand [football]. Why would somebody take a ball, just to get their arms and legs ripped off?"

Although she used to roller skate, that activity had to be cancelled after the surgery on her spine.

When Stephanie went skiing last year, they had a pair of tiny skis, and they stuffed a pair of shoes so that she would fit into them, but there were no poles that were near her size. She opted to ski without poles. "First timeit was cool. I kept falling over and I couldn't get back up!"

Powerful personality

Highly optimistic and charged with positive energy, Stephanie Mayhugh may be small in stature, but not in spirit. Where others find limitations, Stephanie sees the opportunity for adventure and the possibility of helping others.

In 1997-98, Stephanie took a certification class at Valley Memorial Hospital in Pulmonary Rehabilitation. "I went from being a patient to making it a job. Working for Pulmonary Rehab helped my health a great deal. When I motivated [patients], it kept me motivated." With frustration, she added, "Now that I have my certificate, my hips are in too much pain for me to do the job."

"I have adapted to a lot of these problems," said Stephanie. "I think that God made me the way I am to inspire other people to keep plugging away. When they see me, they say, 'If she can do it, I can do it!' That's my job; I supply motivation."

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