Violet Paul, a one-year-old girl, has known nothing but darkness. She was born with a rare gene, FOXC1, which means she has no irises, high eye pressure and experiences jittery eye movement. Irises, the colourful ring in our eyes, aren’t just for show. They control how big or small our pupils are, which lets light through. Without them, Violet’s eyes are completely black and let too much light through, a condition called Aniridia.
Early surgery brings hope
Parents Madison Mitchell, 24, and Steven Paul, 30, considered everything they could to help their child, with doctors saying she’d be lucky to see a ceiling light. But at just two weeks old, Violet underwent trabeculectomy surgery at the University of Iowa. The operation, often carried out on people with glaucoma, involves draining the fluid from the eye. The treatment was a success, introducing a child who has barely seen anything to a world of light.
Violet has slowly regained her eyesight, with the family celebrating by taking her on a nighttime stroll through St. Louis, Missouri, on April 6. In a video posted to Madison’s TikTok account, Violet can be seen gazing upwards and smiling at the streetlights as her dad carries her.
A moment to cherish
Madison, a stay-at-home mum from the Midwest, said: ‘She was so happy and awestruck that she began kicking her feet, squealing happily, smiling, and shaking her head out of happiness. ‘It’s a moment Violet’s father and I will cherish forever. It’s bigger than taking her out at day because she’s sensitive to the sun. ‘It was such a reassuring moment where we both knew as her parents that we were doing right by our daughter in trusting her team of doctors and making sure to follow her treatment plan.’
Madison regularly posts about Violet on social media to raise awareness of the rare condition Violet has, Aniridia. Around one in 50,000 people are born with Aniridia, according to Sight Research UK. Violet also has congenital glaucoma, where the optic nerve – the tissue that transmits what the eye sees to the brain – is damaged by high pressure. This clouded her corneas, which focus light on the retina at the back of the eye, before she was born.
First birthday and fireworks
Violet celebrated her first birthday on July 4 – even watching a fireworks display, something doctors thought she would never see. ‘It was hard not to get emotional watching Violet be enamoured by fireworks,’ Madison wrote on TikTok, sharing photos from the show. ‘Knowing that she is truly seeing them brings me unexplainable joy. ‘Being Violet’s mom has made me appreciate all of life’s joy more than I ever did before. And for that, I am forever grateful.’
Understanding FOXC1
Researchers have tied FOXC1 to dozens of eye-related conditions. Mfazo Hove, a consultant surgeon in ophthalmology, or the treatment of eye diseases, told Metro: ‘When FOXC1 does not function normally, the front of the eye may not develop as it should before birth.’ ‘Some children are born with abnormalities of the iris or the eye’s drainage channels. ‘The biggest concern is glaucoma because, if the drainage system is underdeveloped, pressure inside the eye can rise and gradually damage the optic nerve.’
Hove, of Blue Fin Vision, said FOXC1 can cause photophobia, or light sensitivity, as well as reduced vision and glare. ‘The good news is that with regular monitoring, modern glaucoma treatments and appropriate visual rehabilitation, many people retain useful vision throughout their lives. ‘Genes like FOXC1 don’t determine someone’s future, but they do tell us who needs careful lifelong monitoring so we can protect vision before damage occurs.’
