"Kendra's Wish"

by Tana Knott

Originally printed in The Farmville Herald,

Farmville, VA 23901

February 14, 2001

DILLWYN -- If nine-year-old Kendra Grace Call could have one Valentine wish, she would wish for a more compassionate society. She wants people to have more heart.

Kendra longs to walk through a shopping mall without feeling the glares of others and hearing hurtful comments.  She wants to enjoy a visit to a restaurant or fast food place without being the subject of cold eyes.  She welcomes smiles and hellos from strangers but seldom receives them.

Kendra has Treacher Collins Syndrome.  Never heard of it?  You are not alone.  Treacher Collins Syndrome is rare and strikes about one in ten thousand.  It is a craniofacial genetic disorder primarily affecting the structures of the head and face.  Babies born with Treacher Collins or mandibulofacial dysostosis usually have depressed cheekbones, malformed or absent ears, a receding chin, and slanted eyes.

Individuals with this condition have some degree of hearing loss, usually conductive.  Because the pharynx and nasal passage are small and narrow, there may be breathing problems, especially at night when sleeping.  Many Treacher Collins children require a tracheostomy.  Other problems that may occur in affected individuals include cleft lip, cleft palate, strabismus (an eye or eyes turning in), heart defects, and digestive problems.  Most people with Treacher Collins have normal development and intelligence.  However there may be a slightly increased incidence of developmental delay which may be related to the hearing loss.

For Kendra, Treacher Collins Syndrome means more than having to cope with the facial characteristics synonymous with the condition. She is legally blind in one eye.  She relies on a hearing device.  She has breathing problems.  She must chew her food with her mouth open because she can’t get enough air through her small nasal passages.

The petite third grader is not looking for pity.  She says to save the pity for people who treat her with rudeness.  Her parents, Wanda and Kenneth Call echo her sentiments.  “We don’t want people to feel sorry for us,” they chorus.  “We have never wanted that.”  What they want is to be able to ward-off the gazes and gapes that shadow them when they go out in public.

“My family likes to go to dinner.  And, I want to take them,” explained Kenneth.  Like other families, they also enjoy going to the mall, the movies and other places. Unfortunately when the family goes out, they usually have to endure the dreaded stares.

It was one of those outings that prompted the family to contact the newspaper in hopes of reminding people to be more caring, more compassionate.  “We all need to realize that we can hurt people without saying a word,” explained Kenneth.

“Sometimes you want to say something to people when they keep staring,” stated Kenneth.  As he talked, the couple’s younger daughter, Tiffany, bounced on her father’s knee.  She is a healthy and active five-year old who is adamant about being Kendra’s best friend.

Kenneth admitted how there are times when he struggles to keep control of his anger. He explained how, like Wanda, he tries very hard not to counter rudeness with rudeness. His wife nodded in agreement. Kendra, seated between her parents, shrugged her shoulders and gave a slight smile.

The family said they know people will look at someone who appears different.  They expect that.  However what they hope will change is the long, rude stares.  Wanda offered, “If they would look and then leave us alone, we could deal with that.”  Kendra shook her head in agreement.

“Questions are fine,” said Wanda.  “We don’t mind questions, even silly ones.”  She shared how one person asked if Kendra’s condition was contagious.  “But the stares are hurtful,” sighed Wanda.  “If we feel the stares, we know she feels them.”  She added, “As a parent, you hurt for and with your child.”

“Once people get to know Kendra, they realize she is a special little girl,” explained Wanda, acknowledging how appreciative they are of those who have helped nurture and care for Kendra. “So many people have been wonderful,” she said, offering special thanks to Kendra’s teachers, her classmates, and countless others who have befriended her daughter.

A Gift

When Kendra was born she was more than two months premature.  Complications associated with the premature and difficult birth as well as Treacher Collins meant a three month stay at UVA before her parents could bring her home.  Even though they were armed with skills such as CPR, Kendra’s apnea and other health problems meant countless trips back to the hospital, some via the rescue squad.

The more they stayed around the UVA Children’s Center and the Kluge Center, the more they realized they were blessed, shared Wanda. “There are so many children with much more severe problems than Kendra’s,” she said.

Wanda admitted, “It was so hard to accept at first.”  She continued, “There was denial, guilt.  You wonder if you did anything wrong, whose fault it is.”  As the weeks turned into months, the couple drew closer to one another and God.  The small infant became their gift, their blessing.

“With all of the problems she had at birth, they said she’d never be quite normal.”  Wanda sighed,  “I hate that word.”   She shared, “Today Kendra is an honor roll student.”

“Everyday with Kendra is a miracle,” stated the young mother. “She is a gift.  She teaches us so much,” explained Wanda.  “She has changed all of us.”  Wanda paused and reflected, “Kendra has taught me how we need to get to know the person inside.”

The Person Inside

Getting to know the person inside is just what Amie Osborn thinks is the answer for people who encounter someone with Treacher Collins or other facial disfigurements.  Osborn is a young woman in her early twenties who has Treacher Collins Syndrome. She graduated from the University of Texas at Austin with a B.S. in Communication Sciences and Disorders and is now in medical school.  On her web site, www/treachercollins.org/home.html, she shares her personal feelings on dealing with the condition.

Osborn offered, “People are scared of what is different, of what they don’t understand.  They give wide berth to the things and people that they perceive as a threat to them.  In a way, this is good; it’s a defense mechanism.  In another way, it breeds ignorance and heartache.”

According to the young woman, “Society tends to shun those that aren’t ‘normal.’  Society just doesn’t understand that below the surface these ‘different’ people are as ‘normal’ as one can get.”  She hopes for a new trend in society, a trend that looks inside the soul before judging someone because they don’t look ‘normal.’

When asked for advice on how to deal with people who have facial differences like Treacher Collins Syndrome, Osborn told The Herald, “It’s simple.  Just keep in mind that people who look different on the outside are really no different than you or anyone else on the inside.”  She added, “Thus, treat them the same way that you would treat any other person.  I know it sounds silly and cliche-ish, but I know of no simpler way to put it.”

Day by Day

The Call family relies heavily on their faith in God to help them through each day.  “We try not to dwell on the future, we just deal with each day,” explained Wanda.  Some of the hardest days have been associated with surgeries and other medical procedures.

Last summer Kendra underwent a major operation that included taking bone from the back of her skull. Her father explained how her scar stretches from ear to ear.  He told how the five-hour surgery entailed pulling the facial skin down to her chin so the transplanted bone could be grafted to help restructure the young face.

As her father talked, Kendra signaled she had something very important to interject.  She eagerly shared how one of her doctors at the University of Virginia Hospital, Dr. Jane, has a very famous patient, Superman’s Christopher Reeve.

“Yeah and I had to get rid of my trampoline,” said Kendra with regret.  “And I can’t play kickball.”  Kickball is her favorite sport.

Her father explained that since the graft took a layer of bone from the back of her head, physical activity must be restricted because that area of the skull was weakened.

Kendra said her head still hurts especially when her hair is washed or combed. She touched the small decorative barrettes that were barely attached to her hair.  “These are the only ones I can wear,” she said.

She talked about her unwillingness to undergo more surgeries.  The next one will involve breaking her jaw bone and other equally painful sounding procedures.  What is her biggest concern with the operations?  “I’m afraid I will die,” said the nine-year-old.

When Kendra shared her fear, the same terror reflected in the eyes of her parents.  Kenneth talked about watching his daughter going into the operating room last summer.  As the doors started to close, the frightened child cried out for her father.  “I wanted to pick her up and run,” said Kenneth.  But he didn’t. “It was hard,”  he added.  “I want to do what is best for Kendra,” he stated, noting how he must assess what is best for her both physically and emotionally, not only for the present but for her future.

“God gave Kendra to us for a reason.  I am certain of that,” offered Wanda.  “I don’t believe He would take her away.”

Kendra’s Plea

Kendra and her parents are hopeful that reminding people about how hurtful a cold stare can be will make a difference.  They want people to look deeper than a person’s outward appearance to what’s inside.  However, they know that before that can happen, people must look within themselves.

Kendra’s plea resounded Amie Osborn’s advice.  ““I’m really just like everyone else,” said Kendra.  “So please stop staring at me.”