Jaques Woest, a father from Ravenswood, recently received the shocking news that his son, Keegan (9), was born with a rare visual impairment and is now urgently in need of the community’s support.
For years, Keegan’s family were under the impression that he just needed glasses to improve his poor vision, but after further tests he was diagnosed with septo-optic dysplasia (SOD).
Jaques explained that it is a rear congenital malformation syndrome featuring the underdevelopment of the optic nerve, pituitary gland dysfunction and abnormal formation of structures along the midline of the brain.
“Symptoms of the disease may vary, depending on the patient. Keegan is completely blind in his one eye and only has partial vision in his other eye,” Jaques said.
Keegan is also receiving treatment for growth hormone deficiency and the family is also suspecting that he might have a form of autism and are looking into it.
“His diagnosis of SOD came as a bolt out of the blue for us as we were completely oblivious of his condition. We knew he had poor eyesight and got him glasses. We were told it was a nerve that will come right.
“One day he ran into an enormous rock and we couldn’t understand how he couldn’t see it. We realised something is wrong and did further tests that made our biggest nightmare come true. He told us the glasses are not working, but we thought he just didn’t want to wear it.
“The doctors told us there is nothing they can do at this stage to improve his vision. At least it seems that his vision won’t deteriorate.”
After his diagnosis, the family decided they have to do something to help Keegan.
“We did research concerning his disorder, then connected with other people with the same condition and figured out that a Connect 12 device might help him. We are now trying to raise R38 000 in order to purchase the device for him.
“Keegan is unable to go to a public school at this stage due to his visual impairment. He is struggling to see on the black board and has trouble reading a normal book. He is now in Grade Two at Back 2 Basics Education Support Centre, a school for children with special needs. Due to his visual impairment, he had to repeat a grade.
“This is why we would like to buy him a Connect 12 device. This is a powerful magnifying device and a solution to enlarging print and images with the added benefit of instant connectivity in the classroom.
“This device will make it possible for him to see what he is doing on paper. We hope this device will help him to get admission into a public school, as a public school will give him the opportunity to do athletics, which he loves, and he will be able to have more friends.
“He is an intelligent boy who taught himself to speak Russian and French, in addition to Afrikaans and English,” Jaques explained.
“The costs of a new Connect 12 device is approximately R66 800. In the meantime, my fiancé managed to make contact with a lady from Cape Town who has the same problem as Keegan. She is selling her device, that has barely been used, for R38 000.
“She is not using the device anymore as it is mostly used in school. In mid-October, she will be in Johannesburg and we would like to purchase the device when she is here.
For more information or to make a contribution contact Jaques on 082 265 8280.