From the time Joey was born, Sara Holloway knew something was wrong. But doctors told her it was nothing or Joey was just stubborn. It took many doctor’s appointments, second opinions and car rides home in tears before Holloway got an answer, the very rare disease—Costello Syndrome.
Only 600 people in the world have ever been diagnosed with Costello Syndrome, and Joey is the only one in Jacksonville with it.
Joey is 16 months old and has already had five surgeries, tons of exploratory procedures, and has spent around 120 days in the hospital in his short life.
“The medical field is the only field that someone can be wrong so often and miss so many things other than meteorology, and still have a job,” Holloway says. “Since the diagnosis, I have realized that I have had to teach the doctors.”
But she hopes that will change with a trip to a specialist in Costello Syndrome, located at the Dupont Hospital in Delaware. The doctor there has treated 100 of the known cases of the rare disease. Her insurance has just approved the visit and Holloway just got word the hospital has an opening at the end of October—she was originally told it might take six months to get Joey in.
The catch? Holloway has to pay for the airfare, hotels, car, etc., out of pocket. Which is hard when you’re a single mom who can’t work full time because you have a special needs child.
Costello Syndrome affects every part and function of the body; intellectually, developmentally, and physically. Many Costello kids look alike, because syndrome diseases often cause similar physical features. There is a 66 percent chance that Joey will get childhood cancer. One in six dies before the age of ten.
For Joey, who is developmentally ten months delayed because of the syndrome, it means regular cancer screenings, annual MRIs, exploratory procedures and ongoing new issues.
And while eating isn’t a big thing for most children, for Joey, it’s one more step to normalcy. When Holloway saw Joey put food in his mouth for the first time recently at a restaurant she bawled like a baby. So when Christy Whitehead Photography offered to do a cake smash with Joey with the theme “Just Keep Swimming” it resonated with Holloway as it does with other families dealing with the disease.
Whitehead said it just felt like the perfect theme for the photo shoot. But when Holloway returned from a conference on Costello Syndrome and she heard other families using the phrase to talk about their life, Whitehead and Holloway just got chills. It was so perfect.
Holloway hopes to bring awareness about the disease so other mom’s who were in her boat can find answers. In the meantime, she’s relishing in the normalcy of simple milestones like eating cake.
Donations can be made to Sara Holloway at: https://www.youcaring.com/sarajoey-783024
Video is available from Drawn In Media: https://mediazilla.com/Rowukuar5
Family and children’s photographer Christy Whitehead Photography provided the cake smash portraits and family photos for this article. www.JaxPhotographer.com For more photos, email [email protected]
Cake in photos was provided by Bold City Confections in Jacksonville, Florida. http://www.boldcityconfections.com/
For the original news story, please visit https://pressreleasejet.com/news/just-keep-swimming-is-anthem-of-costello-syndrome-patients-jacksonville-child-only-one-in-city-with-ultra-rare-disease.html.
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