Faces of Rare Disease: Cloverleaf Syndrome - KPLC 7 News, Lake Charles, Louisiana

Faces of Rare Disease: Cloverleaf Syndrome

Posted: Updated:
  • HealthMore>>

  • People seek out health info when famous person dies

    People seek out health info when famous person dies

    WEDNESDAY, April 23, 2014 (HealthDay News) -- The deaths of well-known people offer an opportunity to educate the general public about disease detection and prevention, a new study suggests. Researchers surveyed 1,400 American men and women after Apple co-founder Steve Jobs died of pancreatic cancer in 2011 and learned that more than one-third of them sought information about his cause of death or information about cancer in general soon after his death was reported. About 7 percent of th...More >>
    WEDNESDAY, April 23, 2014 (HealthDay News) -- The deaths of well-known people offer an opportunity to educate the general public about disease detection and prevention, a new study suggests. Researchers surveyed 1,400 American men and women after Apple co-founder Steve Jobs died of pancreatic cancer in 2011 and learned that more than one-third of them sought information about his cause of death or information about cancer in general soon after his death was reported. About 7 percent of th...More >>
  • Spouse's sunny outlook may be good for your health

    Spouse's sunny outlook may be good for your health

    Marriage vows often include the promise to stick together for better or for worse, and research now suggests that when it comes to your health, having an optimistic spouse is better.More >>
    Marriage vows often include the promise to stick together for better or for worse, and research now suggests that when it comes to your health, having an optimistic spouse is better.More >>
  • Mental illness not a driving force behind crime

    Mental illness not a driving force behind crime

    TUESDAY, April 22, 2014 (HealthDay News) -- Less than 10 percent of crimes committed by mentally ill people are directly linked to the symptoms of their disorders, a new study shows. "When we hear about crimes committed by people with mental illness, they tend to be big headline-making crimes, so they get stuck in people's heads," said study author Jillian Peterson, a psychology professor at Normandale Community College in Bloomington, Minn. "The vast majority of people with mental illness a...More >>
    TUESDAY, April 22, 2014 (HealthDay News) -- Less than 10 percent of crimes committed by mentally ill people are directly linked to the symptoms of their disorders, a new study shows. "When we hear about crimes committed by people with mental illness, they tend to be big headline-making crimes, so they get stuck in people's heads," said study author Jillian Peterson, a psychology professor at Normandale Community College in Bloomington, Minn. "The vast majority of people with mental illness a...More >>

All this week on KPLC, we are introducing you to people in our community living with extremely rare diseases - to hear their stories of strength, bravery and hope.

Ainsley DeSonier is one of those faces, living with a disease so rare it is estimated only 21 other people in the entire world have it.

It is morning in the DeSonier home in Lake Charles and for 33-year-old Ainsley, that is her personal time with scripture.  This miracle woman lives with an unwavering faith, something that has only grown through the medical circumstances that have threatened her life since a seven month ultrasound first detected a problem.  "There seemed to be a problem in the shape of the skull," said Ainsley's mother, Dale.

Ainsley's skull fused early on in utero, forcing the brain to grow in an outward direction.  "The areas near the ears are some of the last to solidify and so it pushed her ears basically kind of down like this and that gives the part of the cloverleaf," said Dale.

Cloverleaf Syndrome (Kleeblattschadel Deformity) is the name given to the condition, because the head is truly shaped like a cloverleaf, as CHRISTUS St. Patrick internal medicine physician, Dr. Yoko Broussard explains.  "They have malformations of their face, they have malformations of the brain where they sometimes look like three lobes of the brain instead of two," said Dr. Broussard.

At just two weeks old, Ainsley's skull was removed from ear to ear to allow her brain to grow normally.  "If there was not some cranial intervention, surgical intervention within the first year," said Dale, "the brain continues to grow after delivery, so there could be more severe brain damage and possible death."

Life expectancy for Cloverleaf Syndrome is often measured in months, not years.  But not for Ainsley, who smiles after 51 surgeries to correct her skull, vision, hearing, ability to eat, speak - and live as independently as possible.

When I asked Ainsley what she wants to people to know about her, she said she wants them to know she is a person with feeling and intellect.  "I am able," she said through sign language, "to do everything that I can do ."

In spite of Ainsley's small stature, she is known across Southwest Louisiana for her big heart. It is something she puts to work every year, volunteering with the Children's Miracle Network - inspiring and helping other sick children.  "To help the children to get the services they need," said Ainsley.

There is so much more than meets the eye for Ainsley, including her sharp wit and her intelligence.  Ainsley even works as an incredibly efficient paper shredder at her father's, Dr. Keith DeSonier's, medical office in Lake Charles

With the ups and downs and questions that come with such a rare diagnosis - there is one Bible verse that Ainsley says re-centers her each day.  "I am fearfully and wonderfully made," she said. 

Dale says Ainsley has truly come to know that God made her the way she is for a reason and its their mission to be a blessing to others that are also dealing with rare diseases.

Because Cloverleaf Syndrome is so rare, it is extremely tough for geneticists to pin down exactly what causes it. At the time of Ainsley's diagnosis, she was only one of six people in the world to have it.

Copyright KPLC 2012.  All rights reserved.

Powered by WorldNow