Moorfields is raising awareness of rare eye diseases and its innovative work in finding treatments to prevent and cure these conditions.
The trust recently shared the stories of four young children who gained life-changing improvements in sight following treatment with a pioneering new genetic medicine.
A chance encounter with Moorfields Professor Michael Michaelides, consultant retinal specialist, at a conference in the US meant Jace was able to travel to the UK to receive the life-changing treatment.
When Jace was two months old, Dad Brendan said to Jace’s mum DJ: “At what age should he start looking at us?” They then contacted clinicians they knew and were referred for tests to see if the cause could be neurological or genetic.
Brendan explained: “We spent months talking to doctors, hearing their hypotheses, until a retinal referral confirmed he has an aggressive form of LCA (Leber Congenital Amaurosis). By chance, at a charity’s conference, we met Professor Michaelides, who told us of his research work at Moorfields, and we were accepted for this experimental treatment”.
Jace’s Mum, DJ, added: “After the operation, Jace was immediately spinning, dancing and making the nurses laugh. He started to respond to the TV and phone within a few weeks of surgery and, within six months, could recognise and name his favourite cars from several metres away; it took his brain time, though to process what he could now see. Sleep can be difficult for children with sight loss, but he falls asleep much more easily now, making bedtimes an enjoyable experience.”
Brendan says they are so grateful for the opportunity and for the care Jace received. “We feel we have friends now at Moorfields. When first offered the chance to participate, we wanted to give him everything we could, for him to successfully navigate the world. We also understood the huge implications for future research, and how participating could help others. It has been a phenomenally positive experience, and the results are nothing short of spectacular.”
Read our news story Genetic therapy gives infants life - changing improvements in sight in full to find out more about the treatment and the team behind it.
4 March 2025