October 8, 2001
With knowledge, comes understanding and acceptance
by Deborah Stone
Aly Wilken and her friend Dominique (Dom) Seaman are typical six-year-old girls who love to ride their bikes, play with Barbies, build with Legos, watch movies and read their favorite books. Aly also loves to swim and rollerblade, while Dom prefers to draw and take drama classes.
Both girls entered first grade this fall at Bellevue Christian School's Woodinville site, Mack Elementary. The two have become close friends over the past year, recognizing that they have something very special in common - they are both dwarfs, or "little people," as they often refer to themselves.
Aly was born with achondroplasia, a form of dwarfism that affects about one child in every 40,000 births. An individual with achondroplasia has disproportionate short stature. While the size of the body is essentially normal, the head is large and the arms and legs are short when compared to the body length.
Dom has Kniest dysplasia, a rare form of dwarfism that affects the body's joints and most often leads to severe mobility problems with age. It occurs in one in every million births.
Although some types of dwarfism may have associated medical complications, most short-statured individuals have a normal life span and normal intelligence, achieving the same range of career paths as average-sized persons. Both Aly and Dom were born to parents of average stature with no family history of dwarfism.
At five months into their pregnancies, Aly Wilken's mother, Denise, and Dominique's mother, Deslie, (each living in different towns and unaware of the other) had ultrasounds, which identified noticeable differences in the body proportions of their babies.
"I remember the ultrasound taking such a long time," comments Denise. "I had had ultrasounds before with my two other children (Jeff, now 13 and Michael, 10) and they hadn't taken so long, so I was just curious about the length of time. The technicians had been measuring and remeasuring and I soon discovered that the results indicated that my baby's arms and legs were two to four standard deviations behind the norm in terms of growth rate. Her limbs were shorter and the proportions of her body were off. My husband David and I were then told that it was clear that our baby had some type of dwarfism, which we eventually learned was acondroplasia."
Deslie, however, was initially told by a geneticist that her baby had a one percent chance of being a dwarf. She says, "My husband Dean and I decided to just leave it like that and keep ourselves open to the possibility that our baby might just be in that one percent, but we didn't dwell on it. This was our first child and it was somewhat difficult to believe that there would be any problems because everything had gone along so smoothly thus far. We saw it all as one big adventure. Then in my eighth month, the geneticist positively confirmed the dwarfism. I went home and cried, 'Why me?' Later it became, 'Why not me?'
Both Dean and I came to believe that God chose us to have this special child."
The Wilkens were devastated by their news and experienced a range of emotions, including shock, denial, anger, grief and depression. "It was just so hard to believe that this was happening because we had two sons of average stature, and there was no hereditary link of dwarfism in our family," explains Denise. "We soon learned that, statistically, 90 to 95 percent of acondroplastic dwarfs are born to parents of average stature and no other member of the family is afflicted with the disorder. The dwarfism is caused by a spontaneous mutation of a gene. Basically, it can happen to anyone."
Both girls had a rough start in their lives, dealing with many medical issues. Dominique was on life support for a year, being tube fed, as she couldn't eat by mouth due to massive cranial facial problems.
Aly had an assisted breathing device due to respiratory complications and she was in and out of the hospital for two years, often in frightening "touch and go" situations.
As the girls grew older, so did their awareness of themselves and others. They began to ask questions of their parents because they noticed that they were much shorter than other kids their own age.
"Aly would ask me, 'Mommy, when am I going to be big?' or 'Why can't I swing on the monkey bars?' and although we knew these questions would come, it was still hard to answer them," comments Denise. "We decided to be matter of fact about everything and concentrate on the positives, emphasizing Aly's strengths. Early on, we told her that God made her little and that there was absolutely nothing wrong with being little. Her two older brothers taught her to say, 'Li'l people rule!' so she has always had a positive image of herself and her abilities."
Deslie concurs and says, "I've made sure that Dom understands that although she may be small in stature, everything else in her is big. I tell her that she has all the big things inside of her, like a big heart and a big brain and those are the things that matter most in a person."
Both mothers agree that it has been important to show their daughters how they, as parents, react to people with their numerous stares and questions.
They encourage the questions, preferring to openly answer them, as opposed to shielding their children from what could be awkward and possibly uncomfortable situations.
They tell their daughters that people are staring because they probably have never seen a little person before and they're just curious.
Denise adds, "I always tell Aly that she needs to let them know that little people are friendly, so I urge her to smile and say, 'hi.' Usually, the response is positive and it breaks the ice with people."
One of the biggest challenges for both families has been educating the public about dwarfism, but first they needed to educate themselves. They bought medical dictionaries, consulted experts, researched dwarfism on the Internet and slowly began to connect with other families in similar situations.
The Internet was a gold mine for both the Wilkens and Seamans because it gave them live resources and support, both from other parents who had children with forms of dwarfism and from other dwarfs who could offer their own perspectives and experiences.
They soon realized that educating others also included the medical community because many doctors do not have experience in treating individuals with dwarfism.
"You are your child's advocate," states David Wilkens. "It became apparent to Denise and me that we needed to know everything we could about Aly's condition and take charge in situations that concerned her because so many of the docs we encountered had never treated a dwarf before they met Aly."
Both families have also worked with the teachers, students and parents at their daughters' school, helping to educate them about dwarfism. They have helped to adapt the playground at Mack Elementary and give suggestions on modifications in the classrooms.
The girls are in the same class, as they were last year, after the Seamans moved to Woodinville from North Bend.
"Once we connected with the Wilkens, we knew we wanted to move closer to them so that the girls could be together," explains Deslie. "Plus, Mack Elementary is such a good school and everyone there has been so welcoming and accommodating. It's an ideal situation for Dom and for us."
Both families are members of Little People of America (LPA), an organization that provides support and information to people of short stature and their families. Founded in 1957 by well- known actor Billy Barty, LPA offers a multitude of services to its members, including information on employment, education, disability rights, medical issues, clothing, adaptive devices and parenting tips. It also provides opportunities for social interaction and participation in athletic events.
The Puget Sound area has a local chapter which meets every other month. Twice a year there are regional meetings, and once a year there is a national conference that lasts several days, filled with seminars, workshops and social activities.
"Our local chapter has about 100-150 active members," explains Denise, "and we take turns meeting at members' homes. It's a wonderful organization and the people are very supportive of one another.
"For Aly, it has helped her connect with other little people. She sees little mommies, little daddies and other little children and she can identify with them."
Deslie notes that the organization has provided great role models for her daughter in a warm, positive environment.
As Aly and Dom grow older, their parents see many challenges on the horizon; the onset of adolescence being a major one.
"Adolescence is a difficult time for any child and their parents, but with these girls, it will be even tougher," comments Denise. "There will be many peer issues that I know will be very difficult."
In addition, both girls will face various intense medical procedures in the future to assist them orthopedically. In the meantime, the families take each day at a time, celebrating their children's accomplishments and living life to its fullest.
"Aly has helped us in so many ways," says David. "Because of her we have met so many wonderful people. She has also been such a positive influence on our family, especially our two boys. We have all become more compassionate and stronger."
For Deslie, Dom has helped her draw her nearer to her faith and hold fast to it. She says, "I accept why God chose Dean and me to have Dom, and each day I take joy in having her. Yes, I worry about her future, but I try to just enjoy each day. I've learned so much from her."
Both families want the best for their children, but most importantly, they want others to treat them as normal in every way.
"They can do anything," says Denise. "They're just little people who need to be accepted as normal human beings. They want to live ordinary lives."
Her advice to others is simple: "Don't turn away from them. Don't treat them differently. And don't be afraid to ask questions. With knowledge comes understanding and acceptance."