Stevenage: Girl diagnosed with incurable eye disease

Saffie Sanford, who lives in Stevenage, has been diagnosed with Retinitis Pigmentosa - a disease which causes gradual decline in vision because the photoreceptor cells die.

Saffie is eligible for pioneering gene therapy treatment. (Image: Courtesy of Lisa Sanford) Her heartbroken mum, Lisa, said: "After months of tests and an agonising wait, our beautiful, happy and loving little girl has been diagnosed with Retinitis Pigmentosa, in addition to her severe short-sightedness.

"This serious retinal condition means Saffie has night blindness and poor, declining peripheral vision.

"This is a progressive incurable disease which, over time, will start to take away her sight.

Saffie will gradually lose her sight. (Image: Courtesy of Lisa Sanford) "Daily tasks which others take for granted are challenges for Saffie, and it breaks our hearts to see her struggle.

"A future where her world slowly goes dark and the wonder and colour of life is diminished is one we still cannot comprehend.

"Saffie will never be able to experience many of the fundamental things we hope for our children, such as being able to drive, choose any career, and many others."

Saffie is eligible for pioneering gene therapy treatment, which has only been carried out on 17 children in the UK to date.

Saffie with her parents, Tamer and Lisa. (Image: Courtesy of Lisa Sanford) Lisa said: "We are really hoping for an improvement in her night blindness, increased peripheral vision and, most importantly, a slowdown in any future sight loss. 

"This treatment only exists for this very specific and rare retinal disease. For all other types, there are currently no treatments, meaning that sufferers will lose their sight and nothing can be done.

"This is heart-breaking for those affected, and their families, and we want to do all we can to raise money so that more research and clinical trials can be progressed."

Lisa has launched a fundraising appeal for Retina UK - a charity that funds sight loss research and support.

Lisa said: "We are so fortunate Saffie is eligible for gene therapy treatment.

"This wouldn’t be possible without this charity, and the tireless efforts of fundraisers before us. 

"Please, if you can, support us to raise more money for them, and for Saffie, so that further treatments, and maybe even one day a cure, can be found for this dreadful disease which affects thousands of people in the UK every day."

To make a donation, visit justgiving.com/page/lisa-sanford-1724750393029.