Most 9-year-old children don’t have to worry about hearing loss and deteriorating eyesight, but Megan Lengel of Fairfax isn’t letting these disadvantages take away from her fruitful life.
Megan was born with a rare condition called Usher syndrome, the most common condition involving both hearing and vision problems, according to the National Institute on Deafness and Other Communication Disorders. When Megan was about 3 months old, her parents said they noticed she wasn't reacting to any sounds at all.
"She would just sit there very contentedly because she couldn't hear what was going on," said Susan Lengel, Megan's mother.
Once they discovered Megan was a candidate for a cochlear implant, a surgically implanted hearing device, things looked up for Megan.
"It's a device that enables her to hear," said Eric Lengel, Megan's father. "She wouldn't hear without it."
The device was implanted behind Megan's right ear when she was about 27 months old, said Susan Lengel. It amplifies sound and compensates for the parts of Megan's non-working inner ear, sending impulses to her brain. The implant has four basic parts consisting of a microphone, a speech processor, electrodes and a transmitter and receiver/stimulator. A small, detachable device is attached to the back of Megan's ear, connecting to a waist band. Her hair covers the device for the most part, making it very inconspicuous to others.
TWO OF MEGAN'S favorite hobbies are reading and playing the violin. Both require the use of sight and hearing, so the device has opened up many possibilities for her, said Eric Lengel.
And the possibilities are endless, according to Megan. She has four careers in mind for when she grows up.
"I plan to be an Olympic ice-skater, a teacher, an archeologist or a scientist," said Megan. "I like to do a lot of things."
Meeting Megan is like meeting any other child. She doesn't feel sorry for herself, and she plays and talks as if nothing were wrong in her life. She is articulate and cultured, and said she doesn't really face any impossible challenges.
“One of the hardest parts is when I’m not able to make people understand what I have,” said Lengel.
Megan doesn’t want to be treated differently though. She looks and acts like any 9-year-old, and she’s just as busy with after school and weekend activities, such as soccer practice and violin lessons. She attends Camelot Center, a program for students with hearing impairments at Camelot Elementary School in Annandale. She enjoys spending time with her friends, both at school and elsewhere.
"They're [friends] just my joy because I have more companionship," said Megan.
Her favorite subject at school, Megan said, is social studies. She also shows a keen interest in history.
"I really like learning about famous people and places and battles," said Megan Lengel. "I love to read."
MEGAN READS all the time, said Susan Lengel. Sometimes she'll catch her daughter reading even after bedtime. Since the vision condition of Usher syndrome, Retinitis Pigmentosa, is an eye disorder that causes gradually worsening vision, her eyesight isn't completely lost yet. Eric Lengel said it is typical for vision to be lost by adolescence with this particular condition, but doctors have told them the symptoms progress differently in everyone.
As for doctor's visits, she doesn't need to go that much more than most children. She isn't due for an eye exam for another year, said Susan Lengel, and she gets her liver checked out about every six months as a precaution for some of the preventative vision loss pills she takes, including vitamin A and fish oil pills.
For now, Megan's eye problems occur mostly at night. Her nightlights keep her reading though, but she said she gets disoriented if she forgets to turn them on. The moonlight also makes it easier for her to see outdoors, she said.
In the mean time, Megan said she just wants to be treated like a normal child. She doesn't feel any different, and said she isn't scared of much in life.
"I'm just afraid of being run over by a car," said Megan.