A little two-year-old girl is forced to wear sunglasses everyday because a rare condition means she is super sensitive to light.
Little Rhiannon Kay was born with no irises – the coloured bit surrounding her pupils – meaning her eyes are completely black.
The condition as aniridia means that she cannot control the amount of light going into her eyes and too much light can cause her pain.
Even in winter the toddler has to wear a hat and specialist, super-tinted sunglasses because she is unable to control the amount of light entering her eyes.
At home her parents have blinds drawn during the day to dim the light in their rooms and have a special tint on their car’s windows.
Her parents Teresa Kay, 36, and Vaughan, 38, were first made aware of a problem with their daughter’s eyes shortly after she was born on September 28, 2016.
The mum from Norfolk explained: “When she was first born, the doctors were doing checks and they said there was something wrong with her pupils.
“They said she didn’t have irises. We didn’t know exactly what it was at first.”
The couple feared their daughter was blind because her eyes didn’t follow the light.
But soon Rhiannon was diagnosed with aniridia, a rare genetic condition which affects just two people in every 100,000.
Not only would this limit how much light the toddler could comfortably see but the parents were also told the condition could cause kidney cancer.
Teresa said: “It was terrifying because we didn’t know whether she was going to get cancer. You’re supposed to be enjoying this time with your baby but we were terrified.
“When she was younger her eyes would roll constantly.
“She would look through the right of her eye to look straight where her eyes shake the least.”
It was then that the parents were told their daughter had also developed nystagmus, also known as involuntary eye movements, due to her condition.
Rhiannon also developed cataracts and may suffer from other eye conditions in the future.
Despite her condition, Rhiannon can still see things close up but struggles seeing things in the distance.
Although there is a newly-developed treatment abroad where synthetic irises can be fitted, the parents are reluctant to put Rhiannon’s eyes through too much surgery.
They also fear the synthetic irises are “static” which could make things much worse for their daughter’s eyes.
Teresa continued: “It is very rare she will be outside without sunglasses on.
“She is so sensitive to light so all the windows in our car are tinted. If she did go out without sunglasses then it would be painful and uncomfortable for her.
“The things she struggles with at the moment are depth perception so she can trip up and fall over things.
“She goes to pre-school every week and they try not to change the layout of the room too much.
“We think she struggles to see things in the distance. She’s able to feed herself and play with her toys. She enjoys watching TV and playing with her Disney toys.
“But her hearing is so precise, she can hear a car pull up outside our house while I can’t hear a thing.”
Rhiannon’s condition however has prompted some cruel comments from passer-bys who walk past and see the toddler wearing shades in the winter.
Some are baffled by the sight while others compare her to the musician Elton John because of the sunglasses she is wearing.
The mum explained: “We do get comments, some just see a girl getting ready for summer in winter and some people say: ‘Oh they look really cool’.
“Even when she was a tiny baby people would say things like: ‘Why on Earth are you putting those on her?’
“It is just people making comments every single day. Some are just normal glasses but some are opticians glasses with tinted lens but even then we get comments.
“Mostly I just bite my tongue but sometimes we will tell them the reason.
“It’s just about trying to change those sort of things people say because the comments can be thoughtless and cruel. It can be really hurtful.”
But the family refuse to let the comments affect their happy little girl who Teresa described as “full of life.”
Despite the fact that the family can’t go abroad on a summer beach holiday, Teresa said she would never want her daughter to miss out on anything.
Teresa said: “We would not go on a beach holiday because of the sun and the glare on the sea and sand but we go to our local beach.
“We never want to stop her from doing something, we just have to make adaptions.
“She’s just amazing, the chattiest little two-year-old ever. She’s full of life.”
In a bid to raise awareness of the rare condition and to also raise some money, the couple have got a number of fundraising events lined up.
They have already competed in the Tour De Broads 100-mile route in May and the Norwich Cycle Swarm’s 70 miles on July 7, raising over a grand.
But it’s not over there because they’ve got another 100-mile route on August 18, and the overnight Dusk Til Dawn 12-hour Mountain Bike Night Race in October.
To donate to their fundraising bid, visit www.justgiving.com/companyteams/RhiannonKay
