LEPHALALE — The almost three-year-old Amogelang Mokobotedi, son of Annetjie Mokobotedi from a village near Seleka, was born with a genetic disorder, named Cornelia de Lange syndrome (CdLS). She must look after him all day, because she has no money to put him in a care centre.
People with this syndrome experience a range of physical, cognitive, and medical challenges ranging from mild to severe. The syndrome has a widely varied phenotype, meaning people with the syndrome have varied features and challenges. The typical features of CdLS include thick or long eyebrows, a small nose, small stature, developmental delay, long or smooth philtrum, thin upper lip and downturned mouth.
The syndrome is named after Dutch paediatrician Cornelia Catharina de Lange, who described it in 1933.
Annetjie is one of nine children of which seven suffered from CdLS and passed away. She doesn’t have any contact with the remaining brother.
Amogelang goes to a physiotherapist at Ellisras Provincial Hospital once a month and Annetjie is a good mother, but her child needs the correct stimulation and food. She cannot work because looking after Amogelang is a full-time job. He cannot walk or crawl, so he sits on her lap most of the time.
They have to live on her special needs allowance of R1 700 per month and they still live with her 75-year-old mother and her brother’s son.
Anyone who can assist with information about a place where Amogelang can go to during the day to get special care or a special care school or day school can contact Ansie Solomon at 082 925 1028.