Meet Ruby, the Sunderland girl with a rare sight condition - and a zest for life

Meet Ruby Shaw - the Sunderland youngster with a passion for playtime despite suffering from a rare eye disorder.

Ruby, now five, was only nine months old when her mum Magdalena and dad Niall, both 29, noticed her eyes were wobbling.

Health experts at first feared that Ruby had a brain tumour, or possibly cancer.

'I went numb and turned off'

Magdalena said: "They looked at me like they were expecting me to break down but I felt like I went numb and turned off."

Ruby's eventual diagnosis, after numerous tests including MRI scans, showed she had a condition called Leber Congenital Amaurosis which only affects two in every 100,000 children.

It is a rare type of inherited eye disorder and it causes severe vision loss.

Ruby's mum Magdalena, 29, is the certified carer for her daughter, while dad Niall works in the security section of University of Sunderland.

Five year old with a real zest for life

Magdalena spoke to the Sunderland Echo to describe Ruby's zest for life, and to praise the Guide Dogs group for their wonderful support.

She told how Ruby has a love for everything from Pokémon adventures to outdoor pursuits like swimming, ballet, and horse riding.

Magdalena said: "Ruby has got the best personality ever for someone who is affected by a condition like this.

"She will not stop doing something until she gets it done.

"She loves guide dogs and she loves a show on BBC called Dog Squad."

Guide Dogs group gives superb backing

The family has had superb support from the Guide Dogs charity including taking part in the My Time To Play sessions.

Mum and daughter get to meet other families in similar positions and watched as Ruby revelled, including getting messy with watermelons.

It has helped her to develop her motor skills. The charity is also helping with a health and care plan (EHCP) for Ruby.

Magdalena added: "Ruby's diagnosis was really hard because it is the unknown. It is a degenerative condition and it is so different in every case.

"But we are really proud of Ruby and she gets on with everything."

More about Leber congenital amaurosis

It causes the light-sensing photoreceptor cells at the back of the eye to stop working properly and that causes vision loss.

LCA can cause shaking eyes and poor pupil reaction.

There are at least 20 different forms of LCA.

Symptoms usually develop in the first few months of life.

Those wanting to find out more about Guide Dogs can visit https://www.guidedogs.org.uk/.