Peoria, IL. - Ethan Marshall was just 28 days old when he was diagnosed with Peroxisomal Biogenesis Disorder or PBD. He has already lived past the typical life expectancy for that disorder and continues reach new milestones. It's fitting we focus on little Ethan today since this is also PBD awareness day.
Ethan is just one of 175 living with Peroxisomal Biogenesis Disorder. PBD affects his entire body, from sensory loss and muscle development, to feeding complications. Ethan's mother, Pamela, says the fight to communicate is one of their biggest battles.
"The biggest thing is lack of communication. One of the things everybody wants to do is know what their child needs", said Pamela.
At the age of 7, Ethan is developmentally between nine and 18 months. They're trying to teach him sign language.
There is no cure for PBD at this time.
Thomas Jefferson Primary School is stepping in to help. Pause for P-B-D, or silly sock day, is a day for awareness.
The Global Foundation for PBD researches the disorder and gives families a network of other families struggling with this condition.
The foundation started this day and Pamela hopes it's here to stay for this school...
"It's going to take a mighty, little village and we have one here. We are very thankful for our T-J family", said Pamela.