Ginny Foos, a substitute teacher in the Pleasanton Unified School District, is different. Her job as an educator isn’t confined to the classroom. It’s her life’s work. This Pleasanton resident is a dwarf and it’s her mission to teach others that people who are short of stature are just like everyone else.
Most people are curious about dwarfism, and Ginny doesn’t mind answering questions. The way she sees it, openness helps dispel ignorance and increases acceptance of people who have the condition.
But after three kids–all dwarfs–and 15 years of marriage, Ginny just wishes she didn’t have to educate every single person she meets. That’s why she and her husband, Joe–also a dwarf and a Director of Sales and Marketing for a high tech company–choose to tell their story.
Dwarfism 101: Genetic Mutations Happen
The Fooses have a condition called achondroplasia. Although there are over 200 different types of dwarfism, achondroplasia is the most common. This condition occurs equally in men and women, and occurs in people of all races.
Achondroplasia happens two ways. For Joe and Ginny, their average-sized parents passed on genes that spontaneously mutated resulting in their dwarfism. Joe and Ginny are the only dwarves in their families. This mutation only happens once per every 40,000 live births.
For their children, achondroplasia was expected. After mutation, the gene that causes achondroplasia becomes the dominant gene. So the odds were 50-50 their children would inherit the condition. Their sons, Alex and Ben, each inherited a single dominant gene from their parents, and both are short of stature.
Interestingly, Joe and Ginny had a 25 percent chance of giving birth to an average-sized child and an equal chance of giving a child a double dose of achondroplasia. Children who inherit two dominant genes for achondroplasia (the double dose) do not survive.
It is well known that people with their condition have the same life expectancy as an average-sized individual. But that life expectancy isn’t without some health complications.
Breathing problems, multiple ear infections leading to hearing loss, curvature of the spine and bowed legs are common among people who are short of stature.
Obesity is another problem for dwarves. Their small size means they can process fewer calories than the average person.
In adults with achondroplasia, spinal stenosis is common. This is a condition in which the width of the spinal column is too narrow for the spinal cord. For some people, it is a manageable condition. For others, it is corrected with surgery.
Foos family history: “Little People” persevere
For the Fooses, the basic facts of dwarfism are old news. They have answered these questions about their condition more times than they can count. But while people are inquisitive, the curious often forget to ask about the very rich lives these dwarves lead.
Growing up outside of Boston to average-sized parents, Ginny was known by everyone in town. Her parents first noticed her condition when she was 14-months-old, but it took renowned pediatrician Dr. T. Berry Brazelton to diagnosis it. After the shock wore off, her parents became active in Little People of America. Ginny grew up very aware of her condition and in touch with other dwarves.
At 40, she is just another mini van-driving suburban mom, who happens to be under four feet tall.
Joe, an only child, was born in the U.S. but spent most of his youth in Lebanon. He grew accustomed to people noticing him and learned to use it to his advantage. Being overseas meant Joe’s parents could surround him with love, but did not have access to any formal organization for little people. When he came back to the U.S. for college, he had never known other people who shared his condition.
Joe and Ginny met at Oakland’s McArthur BART station when Ginny approached Joe to find out if he knew about Little People of America. He hadn’t heard of it, so she invited him to an upcoming picnic at Lake Merritt. It was Joe’s first exposure to LPA and Ginny. In one afternoon, he found a support group and a girlfriend.
After they married in 1990, Joe and Ginny wanted to start a family. They knew the genetic risks involved and decided to take the gamble. Alex, their first-born, received only one dominant gene, but during his toddlerhood, he displayed signs of dwarfism. He had problems breathing, numerous ear infections and a severely curved spine. “He’s had more surgeries than birthdays,” said Ginny.
Despite spending most of his first three years of life in the hospital, Alex overcame his health problems and is now a healthy 13-year-old. He attends Harvest Park Middle School.
After their experience with Alex, the Fooses decided to adopt their next child. Through Little People of America, they saw a picture of Dasha, who was waiting for a forever family in an orphanage in Russia. It was love at first sight. Joe and Ginny knew she was perfect for their family.
Dasha, now 14 and attending Foothill High School, was adopted at 4. Dash would ultimately be diagnosed with mild autism. “I like to tell her she was chosen. We wanted a daughter. We wanted a dwarf daughter, and that is why we chose her to join our family,” Ginny related in the Discovery Health Channel’s documentary on the Foos family.
After two kids with special needs, the Fooses thought their family was complete. Then in 1994, the gene that causes achondroplasia was discovered; giving Ginny and Joe new hope that they could again add to their biological family.
When Ben Foos, now 8, was born, amniocentesis confirmed he was a dwarf, but with only one dominant gene. Like Dasha, Ben has none of the health problems that plagued brother Alex.
Today, like any family, the juggle school, work and other activities. Their day, though, has added hurdles: The world is designed for people much taller than they are.
Modifications: Operating in an average-sized world
Driving a car, doing the laundry, and loading a dishwasher are all activities most take for granted. But when the average height for dwarves is four feet, modifications are required to accomplish basic tasks.
Self-installed extensions on their brake and gas pedals enable the family to drive standard-sized automobiles with ease. Long before front-loading washing machines were trendy water-saving devices, the Foos family owned one to make it easier to load and unload clothes from the washer.
While at first glance their kitchen looks like any other kitchen in Pleasanton, the counters are lowered by six inches and drawers were installed to increase the accessibility of storage. The bathroom also has modifications in the area of the counters and an adjustable-height shower.
“When we found this house nine years ago, we knew we would be in it a while, so we made the changes to the kitchen to make it more comfortable for us,” said Joe. “The changes in the bathroom are more recent.”
While remodeling a house is a one-time fix, the Fooses have their share of ongoing struggles. Take finding clothes that fit and are stylish. The family works with a seamstress to alter most items of clothing to fit their frames.
“It adds $15 to $50 to every outfit I buy,” said Ginny.
House remodeling and seamstresses sound daunting? The modification list has just begun. Consider gas pumps, automatic teller machines and customer-facing credit card swipes. All these conveniences are designed for the average-sized individual. Even modifications for wheelchairs don’t help. Dwarves have shorter arms and often find ATM keypads just out of reach–requiring a trip into the gas station or bank to pay for services or get cash.
And then there are the numerous challenges faced in an outing to the grocery store or a concert. Just about everywhere they go, they have learned to adapt. Joe said, “We learn to ask for help.”
“You have to learn to be assertive when you are short of stature, and you have to walk the fine line between being assertive and being aggressive,” explained Ginny of the ways she has had to learn to navigate.
Adaptability: The most important lesson of all
But once in their Black Avenue home, away from the stares of the curious, the need for adaptability is lessened and a typical evening with the Foos family resembles that of any family. Dinner is rushed; a teenager grumbles about homework and another child seeks help with a game. Ginny and Joe seamlessly hand off the tasks of parenting as so many others do.
How the Fooses live life is a lesson for all. Through adaptability and perseverance, the Foos family is making the world a good fit for them–in ways that have nothing to do with height.
There are many terms that are used to describe their condition. “Dwarf”, “little people” and “short of stature” are politically correct terms. The term midget should never be used. It implies something that is “less than” something else. A “midget” car is less than a full-size car. The term “vertically challenged” is used tongue-in-cheek and is inappropriate.
Achondroplasia is a condition, not a disease. For more information on achondroplasia, visit www.lpaonline.org.
Joe and Ginny were born to average-sized families, not normal-sized families. Using the word “normal” implies they are abnormal.
If you are engaging in a long conversation with a person who is of short stature, find a place to sit down. It will make everyone more comfortable.
If you see a little person struggling to reach an item or carry something, offer to help. While the Foos’ don’t want anyone to go out of his or her way, a little help is appreciated.
Getting the Word Out
Making their message public has been part of the Foos’ life for years. In fact, the media’s fascination with their family dates back to when Alex was 8. Since then, the Fooses have been featured in numerous print and Web stories.
The family’s latest effort to educate others is unique. Ginny and Joe, along with their three kids, are featured in an Advanced Medical Productions documentary entitled: “Dwarf Family: Meet the Fooses.”
Filmed in their home and around Pleasanton four days at a time over six months, the hour-long program invites viewers to “stare all they want” as the Fooses share their lives.
Now airing on Discovery Health Network and TLC, the documentary discusses some of the health implications of their condition and the daily challenges that they face. Mostly, it is an intimate portrait of lives spent challenging the definition of normal.
“It’s a great educational tool,” said Joe.
The family is taking its celebrity in stride. The five are used to being memorable. TLC will air the program at 9 p.m. on March 12 and at midnight on March 13. Check local listings for other dates and times.
