Out of all the senses, losing your sight is probably the one you fear the most but watching a family member losing their sight would evoke a whole new level of emotion. For one family, the Lemay-Pelletiers, this became a reality when three out of their four children were found to have a condition called retinitis pigmentosa.
Retinitis pigmentosa is a genetic disorder of the eyes which causes damage to the retinal cells at the back of the eye. Patients first notice symptoms in childhood, which usually starts with night blindness, and as it gets worse, to tunnel vision. Currently, there is no treatment for the condition, but scientists are working on gene therapy which looks promising.
The eldest of the Lemay-Pelletier children, Mia, was diagnosed a few years after she first noticed vision problems, when she was three and in 2019, there was more heartache for the family when two of their sons were diagnosed with the same condition. Their second oldest son fortunately was given the all clear.
Amazingly, despite their bad news, the family sprang into action and decided to give the children the gift of ‘visual memories’ by taking them on a once in a lifetime, round the world trip. They originally started with a well-planned itinerary taking the Trans-Siberian railway to Mongolia and China. They had wanted to start in July 2020 but as the pandemic hit, they had to cancel and rearrange their plans numerous times until eventually they were able to leave in March 2022.
As Africa was one of the first continents to open up for travel, the Lamay Pelletier’s started in Namibia where their children could see elephants, zebras and giraffes before travelling to Zambia, Tanzania, Turkey, Mongolia and Indonesia. The family try not to plan too far ahead and base their next adventure on what they want to see next, and they document their adventures on Facebook and Instagram. They use their social media platforms to share photos of their children in the most spectacular landscapes and having incredible experiences including sitting on sand dunes in Namibia, riding reindeer in Mongolia and dancing with Maasai people.
It is difficult to predict how quickly retinitis pigmentosa will progress, but with the diagnosis, the family felt there was a sense of urgency as they thought it was likely their children would lose their sight by mid-life. It became a priority to immerse their children with experiences of other cultures, people and scenery so that they could have a full visual experience before their sight begins to fail.
Whilst this is a truly inspirational story, it is not possible for everyone with sight loss to travel the world! But there is support available for anyone who suffers from sight loss. Your optometrist can refer you to the low vision clinics, who can help with advice and optical aids to help you see better, and you can get further advice from the RNIB or other charities.
Denise Voon MCOptom Prof Cert Med Ret
Denise is one of The College of Optometrists clinical advisers. She has spent most of her clinical time in the hospital eye service and is an adviser to the General Optical Council.