SLU Plays Host to Families of Children with Rare Genetic Disorder

Wednesday, June 22 – Saturday, June 25 the department of communication sciences and disorders along with the department of educational studies in Saint Louis University’s College of Public Service will host the “Fourth International Costello Syndrome Conference.” SLU’s conference will offer services such as speech and language, hearing and educational evaluations, as well as conference seminars on this extremely rare syndrome.

According to the BBC Health page, Costello Syndrome is a rare inherited disorder first reported in 1987 by a pediatrician in New Zealand. Typical features, which become more obvious as the child grows, include: short stature; redundant skin around the neck, palms, soles and fingers; curly hair; papillomata (small fleshy growths) around the mouth and nose; a characteristic facial appearance (epicanthal folds, depressed nasal bridge, large earlobes); pigmented skin; cataracts; and premature greying of hair.

This Saint Louis University conference is the first of its kind offering services to the families during the conference seminars.

Because so little is known about Costello Syndrome, members of the academic and medical communities also will collaborate in order to better understand this rare disorder.

Saint Louis University's office of commuity relations also organized the food and fun for the families who attend the conference.

Kemoll's Italian Restaurant provided some of the food and Fazio's Bakery provided fresh-baked pastries for the conference.

The children will get a special visit from the Billiken and some other special visitors. Since it is too hot for the children to fulfill their wish to go to the Zoo, the Zoo is bringing some petting animals to the kids at the Salus Center.

Each child also was given a tote bag for all their conference materials.