Waardenburg Syndrome—a genetic complex named after Dutch ophthalmologist Petrus Johannes Waardenburg and first described in 1951—is a group of hereditary conditions that infect one in every 42,000 to 50,000 births. It comes with varying degrees of one or a few of the following disorders: hearing loss, neurological manifestations, premature graying of the hair, and skin pigmentation.
Dumeh was discovered by Ghanaian model, actress, and entrepreneur Philomena Afi Esinam Antonio at a clinic when the child’s mother took her for a hearing loss checkup. Dumeh has type II Waardenburg Syndrome, which means that as well as profound hearing lost in both ears, the two-year-old also has the most brilliant blue eyes. Antonio decided to use her modeling platform to raise funds for the child’s cochlear implant, as well as to raise awareness about Waardenburg Syndrome. Concurrently, a GoFundMe account has been set up to accrue more funds, to support another toddler named Miracle who was also discovered with Waardenburg Syndrome and speech impediment.
Dumeh’s mother isn’t the least bit ruffled about how the syndrome has drawn more negative reactions than positive attention to her child. She sniggers over receiving ‘advice’ from a herbal doctor who claims that the condition is a repercussion of keeping a pregnancy while infected with gonorrhea.
“Some kids call her a doll because of her eyes and she would normally shy away due to the attention,” Antonio, who is also an organizer of an Autism Talent Show, tells Modern Ghana. She went on to advise the general public to “take some time to read about [Waardenburg Syndrome] and help educate other mothers and families who might not be aware of its existence.”