Birthday’s are important milestones for parents. First birthdays especially. For children with Costello syndrome, however, celebrating doesn’t always come naturally. After many difficulties, Joey and his mom finally shared that special moment. Find out how below, or follow the original story here.
Joey is 16 months old. He’s already been through five major surgical procedures. He’s had a number of other exploratory surgeries. All together, Joey has spent 120 days in the hospital. So while celebrating a birthday sounds like a walk in the park, life gets complicated with so many challenges.
Costello syndrome affects 600 people in the world. Joey is the only person in Jacksonville to have it.
Every part of the body is affected by Costello syndrome – every function. Joey suffers from intellectual, developmental, and physical delays. Childhood cancer is incredibly likely for Costello kids. Joey has a 66% chance of developing cancer. For every six children with Costello syndrome, one dies before the age of ten. To learn more about this rare disease, click here.
All that in mind, celebrating a birthday is an even bigger deal to Joey’s mother Sara. Most kids do cake smash photos for their first birthday. Joey was back in the hospital.
He had no interest in food. Sara says she knew something wasn’t right from the moment Joey was born. Because of how rare Costello syndrome is it took innumerable visits and second opinions before doctors had any idea. From there it meant more and more visits. Joey’s development is delayed by about 10 months. He has to go into the hospital regularly to screen for cancer, sit for MRIs, and exploratory procedures to try and stay ahead of new issues.
Imagine Sara’s joy when photographer Christy Whitehead offered to do exactly the birthday photos she had imagined.
Christy’s idea was to do a cake smash with Joey themed around the phrase “Just Keep Swimming.”
For fans of Finding Nemo this is alreadya cute enough concept. But the phrase really resonates with Sara. It resonates with the entire Costello community. Sara had just gotten back from a conference with other Costello families. They used the phrase to regularly describe their lives. It was perfect.
Sara and Joey have an upcoming trip to a Costello specialist. They’re hopeful to find more solutions there. Of the 600 diagnosed cases, this doctor has treated 100 of them. It won’t be cheap, and their journey is far form over. Sara hopes that the story, and the photos of Joey can help spread awareness ab out Costello syndrome. She hopes that it will help other moms like her. Moms who were desperate for answers.
For now, she’s delighted to see Joey eating. She’s taking in all the joy of celebrating his first year of life. They share a happy moment over the simplest milestone – eating cake.