JACKSONVILLE, Fla – A local mother whose 19-month-old son has spent most of his life in and out of a hospital due to a rare disorder is fighting for him to have normalcy.
For most of his life, Joey Holloway experienced symptoms that doctors couldn’t pinpoint. His mom, Sara Holloway, said multiple doctors kept telling her “nothing was wrong” with her son despite issues he experienced.
For example, at 2 months old, Joey Holloway weighed less than what he was when he was born. Around 8 months old, Joey Holloway’s sight faded in and out, she said. Today, he is still blind in one eye with delays in another.
“Doctor’s don’t necessarily look at the rare, we had one tell us, ‘Oh he’s just stubborn,’” Sara Holloway said.
It wasn’t until he was 10 months old when a geneticist told Sara Holloway that Joey Holloway was diagnosed with Costello Syndrome. She was told it impacts every part of the body.
“While it’s called a disability, it’s really not because they have their own abilities,” she said. “It’s ok to fight a doctor, it’s ok to tell them they’re wrong.”
Only an estimated 800 people have been documented as having the diagnosis worldwide. Joey Holloway is one of two children to ever have Costello Syndrome.
As a result of the syndrome, muscle tone doesn’t fully develop because it’s hard on the bones. It makes walking difficult and a patient’s brain often grows bigger than the skull, causing it to push down on the spine and cut off fluid to the brain if it’s not treated. Usually, the spinal cord and the Achilles heals are too small and have to be stretched for surgery. The heart also has to be checked regularly for defects.
Joey Holloway also has a 66 percent chance of getting cancer before the age of 10.
As a result of the syndrome, Joey Holloway has spent one-third of his life in hospitals.
“His life isn’t normal… he hasn’t gotten to live a normal childhood,” she said. She said he uses a feeding tube.
In her fight to make her son have a normal life, she saw a Facebook post by a local photography studio asking for baby models for a cake smashing shoot. Sara Holloway applied and said her son was chosen.
“But the day before her shoot, he got sick and had to be hospitalized,” Christy Whitehead said, the photographer of the shoot.
Joey Holloway was too sick to make the shoot. Whitehead, however, didn’t want to miss the opportunity so she scheduled it for a later date and a cake was donated.
“By the time he came in, he was eating and [the mom] cried when she first saw him eat,” Whitehead said.
While Whitehead took the pictures, videographer Rex Polanis captured the moment on video.
"She doesn’t have any newborn photos and her child has this very rare disease I’ve never even heard of," Polanis said. "I have such empathy for anyone who has a child with a disease, just how much work it takes to be there for that child."
They posted the video on social media, hoping to spread the word about Costello Syndrome while creating memories Holloway never expected to have with her son.
"It was so important to me because that’s normal," Holloway said.
It’s a step forward in bringing awareness for parents and a few memories closer to normalcy for the Holloway family.
The other boy, Jalston Miles., who was diagnosed with Costello Syndrome locally died last year at the age of 3, his family said. The Miles and Holloway family are now working together to spread awareness of Costello Syndrome.