Australian researchers have confirmed the benefits of early speech therapy for children with Koolen-de Vries Syndrome (KdVS), uncovering the potential of these children to learn to speak intelligibly given access to early targeted speech intervention.
The study, conducted by the Murdoch Children’s Research Institute (MCRI) in Victoria, Australia, and the Netherland’s Radboud University Medical Centre, is the first in-depth study into the speech and language abilities of children with KdVS.
KdVS is a multi-system disorder caused by the disruption of the KANSL1 gene. It is believed to affect about one in 16,000 children worldwide.
Children with KdVS are typically very cheerful, sociable and cooperative. KdVS is also characterized by mild to moderate intellectual disability, weak muscle tone (hypotonia), seizures, and global developmental delays. These global delays include significant speech delay – on average individuals with KdVS often do not utter words until 2 ½ – 3 ½ years of age or later.
Results of the MCRI study revealed the importance of early speech therapy intervention. Professor Angela Morgan, the study’s co-author and researcher at MCRI, reiterates the highly social nature of children with KdVS and their strong desire to communicate despite challenges such as severe oral weakness.
“These children are highly sociable with a strong desire to communicate.[…] they tend to find powerful methods of communicating beyond spoken language (such as using electronic devices) because for some kids they can be as old as seven before they start to speak.”
Professor Morgan goes on to further explain the role of speech therapists in the treatment of KdVS; “our study also highlighted the critical need for speech therapy and non-verbal communication (e.g. sign language) to support kids with KdVS particularly while they are in preschool.”
Published in The European Journal of Human Genetics, these findings will help families and clinicians in prognostic counseling and the application of more targeted speech therapies for social, literacy and academic outcomes for children with KdVS, according to an MCRI press release.
At NAPA Center, we take an individualized approach to therapy because we understand that each child is unique with very specific needs. We embrace differences with an understanding that individualized programs work better. For this reason, no two intensives are alike. If your child needs our services, we will work closely with you to select the best therapies for them from our wide range of therapies, creating a customized intensive program specific to your child’s needs and your family’s goals. Let your child’s journey begin today by contacting us to learn more.
