AN AMMANFORD mum has thanked three of her best friends for helping to raise awareness of and funds for a rare eye condition.

The day that Mari Roberts gave birth to her daughter Tirion in March, she and partner Rhys noticed that little Tirion’s eyes looked different.

South Wales Guardian: Tirion's sight in her left eye has been affected by the conditionTirion's sight in her left eye has been affected by the condition (Image: Mari Roberts)

“I kept chasing it in the hospital and they found out when she was a day old that she had cataracts in her eyes.

“We were having visits from doctors who wanted to see her because it was so rare,” said Mari.

Tirion was a week old when she was diagnosed with a rare condition on her left eye called PFV. She also had congenital cataracts and microphthalmia. Specialists told Mari and Rhys that it was not genetics that caused it and it was just something that happens.

South Wales Guardian: MACS has provided support to Mari, Rhys and TirionMACS has provided support to Mari, Rhys and Tirion (Image: Mari Roberts)

Only one in 100,000 babies are born with PFV. It means the eye is underdeveloped and leaves babies with visual impairments or even blind. Due to her young age, it is not yet known just how much it has affected Tirion, although doctors believe that she can only see light or dark in he left eye, but her right eye is fine.

Tirion is a happy child and the extent of the detriment to her vision will be known as she gets older and is able to tell her parents and doctors what she can see.

South Wales Guardian: Shannon, Mari and Evangeline Shannon, Mari and Evangeline (Image: Mari Roberts)

She was offered to have the cataracts removed at eight weeks old, but after a second opinion from a specialist in London, Mari and Rhys decided against this as there were more risks involved.

Mari was researching charities and came across MACS who have been on hand to provide support and information when needed and the charity now has more than £2,000 after some of Mari’s friends – Shannon Davies, Mari Cresci and Evangeline Davies - ran the Cardiff Half Marathon to raise funds for the charity.

“They were going to run the half marathon and were looking at a few different generic charities they were considering, but when Tirion was born, I was researching charities to help us and found MACS and then they asked me if I’d found a charity and they decided to run to raise funds for MACS.

“I want to say thank you to them and those who donated. Running a half marathon and raising so much money is just amazing and doing it for other people is such a selfless act,” said Mari.

To find out more about MACS and the work they do, visit