Running to raise Apert awareness: In the words of Adria Goins - KSLA News 12 Shreveport, Louisiana News Weather & Sports

Running to raise Apert awareness: In the words of Adria Goins

11-mont-old Callie Anne was born with a rare disorder called Apert Syndrome. 11-mont-old Callie Anne was born with a rare disorder called Apert Syndrome.

Four months ago I decided to go for it. I signed up to run in my first half marathon. Initially I figured it would help me get back into shape but I wanted to use this experience as a tool to do something greater.

Two weeks into training for my half marathon and I found myself asking why I was suffering through so much agony for one self gratifying goal. In the middle of a jog the idea of "running in someone else's shoes" took a turn in the right direction.

My courageous friend, Jamie Cook, was my inspiration. Her daughter, Callie Anne, was born three days after my son but our pregnancies were very different.

"I was 24 weeks pregnant," said Cook, recalling her experience when she first realized something was wrong. "We went in for a regular ultrasound. We were just excited to see a picture of her and the guy came in and had a weird look on her face. All I knew is something was wrong and I had a bad feeling."

That bad feeling was followed by weeks of testing and doctors still could not give Cook a definite answer as to what was wrong.

"The doctor called and said there's no known syndrome or disorder and I said what do we do now? She said ‘nothing.'"

Callie Anne was born with Apert Syndrome. It's a genetic condition where the child's chromosomes spontaneously mutate in the womb which causes the skull bones to fuse and the hands and feet to web.

There are two known cases of Apert Syndrome in Louisiana. One of those is in Shreveport.

Aiden Hurd is a free spirited 5-year-old. His dad, Shawn, is a Shreveport police officer and Anne is a stay at home mom who had never heard of the disorder before she was diagnosed. "My mom's intuition knew something wasn't right."

Aiden underwent two surgeries to repair his skull and two more to fix his hands and feet.

"He works his iPad like a champion," said Shawn, holding Aiden in his arms as he plays with his iPad. "Computers too. He writes well. He climbs. He knocks on the door."

Apert Syndrome often goes misdiagnosed and even undetected during pregnancy. In east Louisiana that was the case for Heather Malone, who remembers what it was like when her daughter Ellis was born 18 months ago.

"We were surprised when she was delivered," said Malone. "I asked the doctor what went wrong. He said there was nothing you did during your pregnancy that caused this. You did everything you were supposed to do. Don't blame yourself."

That is a frequently asked question by mother's who have children born with Apert Syndrome. But the answer is the same. There is no known cause. 

For Callie Anne she has had four surgeries in 11 months. Each one costs close to $9,000 out of pocket. It's a price this family is willing to pay to give their daughter the care she needs. In October, doctors separated her fused hands and feet into fingers and toes. Callie Anne was left in casts for four weeks.

One month earlier she had reconstructive surgery on her skull to give her brain more room to grow. A few short days after that procedure, Callie Anne was doing things much like other babies her age. She was sitting up, crawling, and pulling up on things. That surgery came with a new identity. Callie Anne's wrinkles on her forehead are now gone leaving her mom to fall in love with her face for a second time.

So when I ask myself what it is like to "run in someone else's shoes" I picture Callie Anne, Aiden, and Ellis, and they remind me of the reason I run. I have dedicated my run to raising awareness of Apert Syndrome. I will also be raising funds to help pay for medical bills for kids with the disorder. To find out how you can help or sponsor me during my run click the link below.

Also to learn more about Callie Anne, click here:!/groups/prayersforcallieanne/

To learn more about Ellis, click here:!/EllisLaineMaloneFoundation

To learn more about Aiden, click here: 

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