Charles C, age 8
Photograph by Crysta Dowdy (2022)
Charles loves Mickey Mouse, Disney World, Harry Potter, going to McDonald’s, drawing, being with his family, and playing with his puppies. Charles looks forward to his therapies because he has the most loving group of therapists.
When Charles was six-months old, his parents recognized he had delays. It was not until he was seven that they finally received a diagnosis of Dias Logan syndrome for Charles—and his baby brother. Dias Logan syndrome is an intellectual disability syndrome associated with a persistence of fetal hemoglobin which is the main oxygen carrier protein.
Charles sees his Dias Logan and apraxia as his superpowers. His mom says this is what makes him so very special. She is inspired that he loves to teach his brother how to do and say things. His brother will do nearly anything he asks. Charles also has a big sister who he admires greatly and wants to do everything she does.
Mom, Kathryn, summarizes: “Charles is an amazing young boy. He can do hard things. He wants the world to know that he does not have a disability, he has superpowers. If we could all think a little more like him and see the good in things…I just love his way of thinking.”
A Charles le encanta Mickey Mouse, Disney World, Harry Potter, ir a McDonald’s, dibujar, estar con su familia y jugar con sus cachorros. Charles espera con ilusión sus terapias porque tiene el grupo de terapeutas más cariñoso.
Cuando Charles tenía seis meses, sus padres reconocieron que tenía retrasos. No fue hasta los siete años cuando finalmente recibieron el diagnóstico de síndrome de Dias Logan para Charles -y su hermanito-. El síndrome de Dias Logan es un síndrome de discapacidad intelectual asociado a una persistencia de la hemoglobina fetal, que es la principal proteína transportadora de oxígeno.
Charles ve su Dias Logan y su apraxia como sus superpoderes. Su madre dice que esto es lo que le hace tan especial. Le inspira que le guste enseñar a su hermano cómo hacer y decir las cosas. Su hermano hará casi todo lo que le pida. Charles también tiene una hermana mayor a la que admira mucho y quiere hacer todo lo que ella hace.
La madre, Kathryn, resume: “Charles es un joven increíble. Puede hacer cosas difíciles. Quiere que el mundo sepa que no tiene una discapacidad, que tiene superpoderes. Si todos pudiéramos pensar un poco más como él y ver lo bueno de las cosas… Me encanta su forma de pensar”.
Family Connection of South Carolina provides services and resources to families who have a child with a disability or specialized healthcare need. Since 1990 we have served more than 100,000 families and today our services are needed more than ever. We focus on parent-to-parent support, guidance with navigating the complex healthcare system, and assistance with school meetings and special education plans.