'We desperately want to change the future for Matilda'

At just three and a half Matilda was diagnosed with macular disease at a routine eye test.

Four years on and Matilda has had three injections in her right eye, but her parents remain worried about what the condition will mean for their daughter’s future.

Her mother Kay, who had only heard of older people being affected, said: “We were shocked to find out what she had and we were seriously worried about what it would mean for her.

“Our perfect three-year-old daughter now had something we knew nothing about and didn’t know whether it would mean she would have any vision at all.”

Many questions went through Kay and her husband’s mind as they contemplated what the future would be like for Matilda.

She added: “I think it was a mixture of fear of the unknown and what on earth is this, what does it mean long term? Will she be blind soon? How will she cope at school? Will she be bullied?”

“We also wondered whether we’d failed as parents, could we have prevented this? Will she be able to still do all the things she loves?”

(Scroll down for more after you've watched the following minute-long video, Matilda's story)

At the moment, Matilda only has one eye affected by macular disease. Because she is so young the injections she’s received have been done under general anaesthetic.

Kay worries what will happen if the condition develops in Matilda’s other eye.

“We worry about the other eye and will the other eye ever be affected?” she said.

“What quality of vision will she have then? It’s just in the right eye at the moment we are trying to make sure it stays that way.

“It is quite scary because you just don’t know how it’s going to play out in the future and obviously there’s not much research at the moment into it.”

Talking about why they are so keen to raise funds for medical research and raise awareness of the condition, Kay said: “I think it’s vital to raise support for macular disease as it’s something so many people know so little about. Without support and awareness we can’t look for new treatments and new technologies to treat the disease. I still live in hope there is a cure by the time she is an adult.  

She added: “We desperately want to change the future for Matilda, which is why we donate to the Macular Society.”

Help find a cure for macular disease