Since March 2022, Canadian couple Edith Lemay and Sebastian Pelletier and their four children have been on the move, taking in sights and sounds as they tour the world. From the dunes in Namibia and valleys in Kilimanjaro to dancing with the Maasai tribals in Tanzania, hot-air ballooning in Turkey and dressing up as a nomadic reindeer herder in Mongolia, it has not been merely a travel for leisure but one with a purpose. For Lemay and Pelletier, this journey is all about creating visual memories for their children. Memories-snapshots of our lived experience-are essential as they help connect our past with our present and prepare us for the future. And, Lemay and Pelletier are hoping these visual memories, carefully curated by them, may come handy for the children when they face the dark days ahead.
"Three of my children have retinitis pigmentosa (RP), a genetic disease without any cure as of now," Lemay told THE WEEK over a Zoom call from Thailand. "Our eldest kid, Mia, is 11 now. Then there is Leo, who is nine, Colin, who is seven, and Laurent, who is five. Leo is the only one who is not affected by RP."
Retinitis pigmentosa is a group of rare eye diseases that affect the retina. It makes cells in the retina break down slowly over time, causing vision loss. It is a disease that people are born with. Symptoms usually start in childhood, and most people eventually lose most of their vision. The retinal cells called rods and cones die in patients with RP because of a mutation in one of their genes. In a majority of cases, rods mainly located in the outer regions of the retina and responsible for peripheral and night vision-die down first. When more centrally located conduits also get affected, the patient with RP would face loss of colour perception and central (reading) vision, too.
Bu hikaye THE WEEK India dergisinin February 05, 2023 sayısından alınmıştır.
Start your 7-day Magzter GOLD free trial to access thousands of curated premium stories, and 9,000+ magazines and newspapers.
Already a subscriber ? Giriş Yap
Bu hikaye THE WEEK India dergisinin February 05, 2023 sayısından alınmıştır.
Start your 7-day Magzter GOLD free trial to access thousands of curated premium stories, and 9,000+ magazines and newspapers.
Already a subscriber? Giriş Yap
What Will It Take To Clean Up Delhi Air?
IT IS ASKED, year after year, why Delhi’s air remains unbreathable despite several interventions to reduce pollution.
Trump and the crisis of liberalism
Although Donald Trump's election to a non-consecutive second term to the US presidency is not unprecedented—Grover Cleveland had done it in 1893—it is nevertheless a watershed moment.
Men eye the woman's purse
A couple of months ago, I chanced upon a young 20-something man at my gym walking out with a women’s sling bag.
When trees hold hands
A filmmaker explores the human-nature connect through the living root bridges
Ms Gee & Gen Z
The vibrant Anuja Chauhan and her daughter Nayantara on the generational gap in romance writing
Vikram Seth-a suitable man
Our golden boy of literature was the star attraction at the recent Shillong Literary Festival in mysterious Meghalaya.
Superman bites the dust
When my granddaughter Kim was about three, I often took her to play in a nearby park.
OLD MAN AND THE SEA
Meet G. Govinda Menon, the 102-year-old engineer who had a key role in surveying the Vizhinjam coast in the 1940s, assessing its potential for an international port
Managing volatility: smarter equity choices in uncertain markets
THE INDIAN STOCK MARKET has delivered a strong 11 per cent CAGR over the past decade, with positive returns for eight straight years.
Investing in actively managed low-volatility portfolios keeps risks at bay
AFTER A ROARING bull market over the past year, equity markets in the recent months have gone into a correction mode as FIIs go on a selling spree. Volatility has risen and investment returns are hurt.