Our beautiful Saffie has been diagnosed with Leber Congenital Amaurosis (LCA)– a rare inherited retinal disease that causes severe vision loss and eventually blindness. There is no cure, but thanks to years of research, a groundbreaking gene therapy called Luxturna exists for her specific type of LCA. Saffie was eligible and had two operations this year.

https://www.gosh.nhs.uk/press-releases/first-children-have-gene-therapy-treatment-blindness-gosh/

The results have been life-changing. For the first time, she saw our faces in the dark and went trick-or-treating at night. Her confidence and happiness have soared. Without this treatment, she would have been completely blind by thirty a prospect which we simply couldn't imagine nor contemplate.

Sadly, Luxturna is the only gene therapy available in the UK, and only for this exact condition. Thousands of children and adults with other inherited retinal diseases (IRDs) have no treatment and face a frightening future.

We are passionate about supporting Retina UK, the only UK charity for inherited sight loss. They helped us through this journey and fund vital research for new treatments including being at the forefront of getting Luxturna approved. In November, we trekked the Sahara Desert to raise money and awareness– meeting incredible people, including some who are blind, and seeing first-hand the urgent need for more treatments and maybe even one day, a cure.

Please help us raise funds so research can bring hope and sight restoration to thousands of families in the UK and beyond.

With love,

The Sanford Family (Lisa, Tam, Shen, Abie, Yen & Isla) xx