A little girl with the most piercing blue eyes has started an important conversation and is changing a country’s understanding of her disorder!
Pretoria, South Africa – Florence Ziniel and her daughter Chogtaa are from Ghana. Chogtaa was born with a rare genetic disorder called Waardenburg syndrome which means that she has ice blue eyes but is also deaf.
Waardenburg syndrome is a rare genetic disorder most often characterized by varying degrees of deafness, minor defects in structures arising from the neural crest, and pigmentation changes. It was first described in 1951.
“Symptoms vary from one type of the syndrome to another and from one patient to another, but they include very pale or brilliantly blue eyes, eyes of two different colours (complete heterochromia), or eyes with one iris having two different colours (sectoral heterochromia). The disorder also causes moderate to profound hearing loss.”
Florence worked hard to raise funds to get her daughter a cochlear implant, in the hopes that helping her hear, would help get her ahead in life.
She successfully raised the money needed, and they travelled to South Africa for the operation… what she did not know is that the pictures used in her crowd-funding campaign were being shared with a different message on Ghana social media!
Living in Ghana, they faced many challenges due to her disorder. Doctors used Chogtaa to spread false truths; saying that having STD’s while pregnant caused her defect, while others said she was burdened with a sick child because of abortions. The final straw was when pictures were used on social media branding her a witch, creating fear amongst people in Ghana.
Now that the operation has taken place, Chogtaa needed specialised schooling. Once again, they had no options in Ghana, so they looked to South Africa to help get her the education she needed!
Eduplex, a school for learners with normal hearing and hearing loss heard about Chotgaa’s story and immediately offered her a fully-funded place in their school where she will learn to speak. They joined forces with “The Oakes Collective” to create a video to tell her story, and change the idea behind “the girl with blue eyes”.
“This is a story about a little girl with Waardenburg syndrome, resulting in her seeing the world through liquid blue eyes and being deaf. They have battled numerous stereotypes and misconceptions, along with the lack of facilities in Ghana.
They have come this far, but the next steps are complicated.”
The school is appealing to anyone for help as now that Chogtaa is ready to start learning, being in a critical stage of her life, they need to get Florence settled into South Africa. She needs help with obtaining the correct visa to live here while Chogtaa gets the much-needed education she deserves.
You can watch their appeal video below, and if you can offer any assistance, you can contact Jayne de Smidt from Eduplex via email or call them on +27 (0) 12 941 2000.