Growing Up Little
Local girl deals with challenges of dwarfism
Author: Mary Keating
For: Idaho State Journal
Date: Saturday, February 9, 2008
1,390 words
Seven-year old Maddie Harrell sat tying her tap shoe before dance class, overhearing the older girls who were gossiping about mall adventures, sleepover plans and boy encounters. It was typical teenage chatter.
But for Maddie, the dream of finding the perfect-fitting jeans in the mall is just that – a dream. To fit her 41-inch frame, all of her clothes must be tailored. Sleepovers will always involve her large and intimidating c-pap machine which covers her face at night and helps treat her sleep apnea.
But despite her personal hurdles, it only takes a few moments with Maddie to realize that, in most ways, she’s just like any other girl.
Two days after birth, Maddie was diagnosed with achondroplasia, one of more than 200 types of dwarfism. The average height of an adult with achondroplasia is about 4-foot-1 for women and 4-foot-4 for men, although people with dwarfism can be as tall as 4-foot-10. Along with short stature, people with achondroplasia often have disproportionately short limbs.
“At first, I think we were in shock,” her mother Becci Harrell admits. “Achondo what? How? Maddie is our fourth child and her three older brothers are average sized. We were not prepared; we didn’t even know what to do or what questions to ask.”
Now nearly eight years later, a healthy, well-dressed and happy Maddie bounds up the stairs wearing tailored jeans and a floral shirt.
“Come see my room!” she shouts over the railing just as she turns, dashed down the hall into a tidy bedroom befitting of a princess.
She adeptly climbs the two step step-stool on the left side of her bed, pounces on the bedspread, and points to a corner filled with stuffed animals.
“See my horses. I just love horses. You know, I will get to ride one someday.”
Day By Day
Becci and Jim Harrell marvel at their daughter’s resilience, that someone so young with so many challenges can approach life with such zest and joy.
Although those closest to Maddie know the pain caused by hurtful comments, unnecessary stares and misguided name calling, Maddie tends to talk around probing questions. She would much rather tell a story complete with little girl giggles, waving arms and dancing hazel eyes than dwell on hurtful moments.
Like most 7-year olds, Maddie loves to tell stories, draw pictures and play games. She takes piano and voice lessons, studies tap dance and recently headed out on a duck-hunting adventure.
The Harrells believe that involvement in many activities encourages growth and fosters confidence.
Maddie is studying both ballet and tap. Currently, her ballet instruction does not incorporate barre work, but when the time comes, it’s likely that the barre will be too tall for her.
“I guess when she reaches that point in ballet, we will just have to build a shorter barre,” Jim said.
This past Christmas, Maddie held the role of a cherub in the Rotary-sponsored Nutcracker ballet.
“It was so fun,” Maddie said. “Lots of people (were there). I had to practice and practice and practice so I could be on stage.”
But being in the spotlight often stirs many questions.
“People often ask what they should call her,” Becci said. “I normally say, well, you can call her Maddie. Most people prefer to be called by their first names than by some defining characteristic,” she added. “Of course, I then say that they can refer to her condition as a person with dwarfism or a person of short stature.”
School
Just before school started in the fall, Maddie admitted she had some reservations about going back into the classroom.
“I am excited to go back to school, but I am also a little afraid. There is this one boy who is mean to me and that scares me a little,” she said.
She pauses, lets out a little sigh and continues, “And, I have to meet new people, and that isn’t always so fun.”
Maddie’s family is very supportive. They spend hours talking with her, listening to her concerns and helping her deal with the challenges. And her older brothers are quite protective. The siblings have typical relationships with the usual banter, but when the roads are slick and icy, her brothers hold her hand on the way home from school and make sure she doesn’t slip and fall.
Getting ready for a new school year in the Harrell family is more than just getting school clothes and buying the listed supplies. Maddie and her parents spend long days with teachers and administrators preparing the classroom, as well as the school.
Maddie’s chair needed to have the back moved forward, and a small box was built to fit beneath her desk to accommodate her short stature. Bathroom sinks and toilets were lowered to better accommodate her needs and help her be more independent while at school. Maddie also has an aide to help her with various needs throughout the day.
Preparing the physical surroundings is just one step in creating an environment conducive to learning for Maddie.
In October, a number of incidences of children teasing led both Becci and Jim to take time out from their busy schedules to spend the day educating the Ellis Elementary community about Maddie and to answer questions about dwarfism. For more on their presentation, see today’s Family Living Magazine.
Following the presentation, life was a little easier for Maddie. A little education about Maddie and people with a dwarfing condition spurred many hesitant children to try and get to know Maddie.
Four months later, when asked to describe the hardest part about school, Maddie tilted her head, gave a toothy grin and blurted out, “Math!”
“What about problems with classmates?” her father asked.
Maddie threw he hands into the air, her fingers spread wide near her shoulders with an excited expression on her face.
“Year, this kid got two red tickets today, And you know, red tickets are given when you are bad she said.
When asked what she likes best about school, she quickly answers reading, spelling and, the absolute favorite, recess.
“At recess, we all run and chase the boys!” I also like making dinosaurs and drawing,” she said.
Maddie doesn’t get discouraged when she heads into a game of tetherball. During recess, she steps up to the tetherball pole with the rest of her friends and laughs and smiles as they watch the ball whirl over heads and spin around and around the pole. She just likes to be involved and do what everyone else is doing.
Her teacher, Sherry VanEvery, says Maddie is much like the rest of her students.
“(She’s) a sweet girl with lots of friends,” she says, “lots of personality and full of comments.”
For a 7-year old, Maddie is quite confident in her reading and spelling abilities.
Before dinner, Maddie with her pink hat cocked on the side of her head, raced through her list of 20 spelling works without hesitation or a mistake. She even shared her first attempts at cursive writing.
“Do you know what is dumb?” she asks, continuing without bothering to pause. “They gave us spelling words over Christmas break. It’s a break from work, don’t you know. I practiced, but I didn’t practice them on Christmas. Hello!”
Life Challenges
“I hate needles,” Maddie declared over the dinner table when Becci mentioned their pending visit for an annual MRI.
“Will it hurt?”
Since birth, Maddie has undergone two brain-stem decompression surgeries due to a narrowing in her spinal canal. The narrowing in the canal affects her brain’s ability to send the message to her body to breath and also affects her arms, legs and hands which can lead to tingling and numbness in her limbs. In the long term, untreated spinal canal issues can cause paralysis and other medical conditions.
“See, I have a scar here,” Maddie said as she turned in her chair and lifted her long brown hair up to expose her neck.
Due to obstructive apnea, another medical condition, Maddie wears a c-pap machine which delivers continuous positive airway pressure while she sleeps.
Although the doctors do not anticipate another surgery in the near future, they must keep a close eye on her. Dwarfs tend to have numerous medical complications.
“We have our share of challenges, but Maddie is a true blessing to our family,” Becci said.