Proud mum sees bright future for girl blinded by the sun
FOR anyone, the transition from primary to high school is tough enough, but for Tyla Rich even catching the bus can be a challenge.
Literally blinded by the sun, the 11-year-old’s world is a grey one, where shapes and shadows are snatched away by daylight.
She wears specially adapted glasses, but it’s only when the curtains are drawn and night time emerges that her vision becomes clearer.
Diagnosed with achromatopsia at eight weeks old, the rare genetic condition means she is registered blind. While she does have some vision, Tyla is colour blind and suffers from photophobia – a severe intolerance to bright light and glare – as well as nystagmus, an involuntary and uncontrollable movement of the eyes.
She also struggles with her directional vision and is only able to pick out objects less than three metres ahead of her. That means day-today tasks as simple as spotting the school bus can be a problem, but the inspirational Ysgol Emrys ap Iwan pupil “just gets on with it.”
At school in Abergele, she sits in class with an iPad wired up to the teacher’s white board. She may need to have the names of colours written on the side of her pencils, but it doesn’t stop her thriving at art.
Her proud mum Kara, of Kinmel Bay, said: “Since starting high school, Tyla is doing amazingly well, the support staff she has there are absolutely fantastic.
“Prior to her going to high school, Denbighshire’s social services team did a lot of work with her getting her ready, with mobility support in preparation for her transition from Ysgol Hiraddug in Dyserth. They also took her for walks around the school to get her used to the classrooms.”
Technically, Tyla is blind outdoors whenever her eyes are exposed to any sunlight. Without her glasses, she wouldn’t be able to see at all and so transferring from indoors to outdoors can have a massive impact on her confidence and vision.
Inside, she finds some rooms very uncomfortable as a result of varying light levels and so is forced to rely on her other senses.
Kara added: “I did worry about her as she didn’t know anyone going up to high school. My heart was beating so fast on her first day watching her walk out of the door saying goodbye. I was in bits.”
But totally unfazed by it all, Tyla is in the top set for maths and middle set for English and really enjoys her languages. She loves art and draws beautiful pictures and would like to take art, drama, music and child care as her options when she gets to Year 9.
Kara added: “I do have to write the name of the colour on all her coloured pencils and she does ask me sometimes what colour is the bark of a tree or what colour is the sun.
“It’s so hard to explain colours to her but it’s such a great method, which means she is independent in her art class.”
The school initially wanted Tyla to be transported to there by taxi due to health and safety reasons, but she was determined to try and get the bus with her friends.
“Tyla’s only concern was when she finished school, there would be lots of buses in the bus park – which of course to Tyla all look the same,” Kara said. “It’s not like we can say to her ‘go and get on the blue bus’, so this then became a problem.
“However Tyla just turned around to me and said: ‘Don’t worry, I’ll just ask’, so off she went.”
Tyla, who celebrates her 12th birthday next week, is off to Alder Hey Children’s Hospital later this month for her routine annual appointment.
At the moment, there is no known cure for achromatopsia but it is a condition that won’t get any better or worse. The only other options available are stem cell treatment or she could undergo an eye transplant, but both involve major risks that Kara is not prepared to take.
“As Tyla gets older, she still is adamant that she does not want to change and she still tells me that she is happy as she is,” Kara said.
“She just gets on with it and she has lots of lovely friends who are able to help her by acting as her eyes.
“Sometimes I wonder what it must be like to see the world like Tyla does, but she is here, she is happy, and she loves life. As her mum, I can’t ask for anything more.
“Tyla has come such a long way from the days when we were told that she would live in a dark world and that she would need to attend a special school.
“I think she is amazing and I know I am probably biased, but I am so proud of her every day and the more confident she gets as she grows up despite her obstacles, the prouder I become.”