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.