Uncle Jack (Jacques in French) was born in 1967, from a modest family in the north of France, when Down Syndrome wasn’t known as well known as it is today.

His mother was a seamstress and his father, a coal miner.

One day, his father took his first flight and as the pilot told him ‘I bet you’ve never climbed that high’,  his father replied ‘and I bet you’ve never come down so low as I did!’

When he was born, the doctors didn’t inform his parents about his diagnosis, so he was considered a ‘normal’ child, until my brother’s birth two years later. At this point, my grandmother realised there was something wrong with her little Jack.

So they found out much later on that their little boy wasn’t like all the others… and they were both shocked and helpless, not knowing how to deal with this ‘new reality’.

They then did something that lived up to their expectations: every year since finding out, they went on a pilgrimage to Lourdes, hoping that it would help them. Nobody knows if it did, but they went every year without fail and it helped them all.

Uncle Jack is four years older than me. He’s like a brother to me, in the same way as my brother who is two years older than me.

Uncle Jack – me – my brother

My brother and I were living near Paris at the time and we could always visit our family during the holidays, which meant we mostly grew up together with Uncle Jack, and played with him at football, tennis, ping-pong, badminton, we made music with him, went cycling, when we were older we even recorded funny videos involving jokes and laughter: Uncle Jack was pretty good at this, he surely could have been an actor !

He went to nursery and primary school within the mainstream system, but when he was 6 ½ years old, he went to a specialized institute until he was 13, which was the year he became fatherless, a devastating cancer took his father away. At the funeral, he gave a last kiss and said good-bye to his beloved father.

He went in another institute from 13 to 20 years of age, and after that he had to stay with his mother because no solution had been found to integrate him into the working world. So, his father’s workshop was later transformed into a small studio for him, so he had his own space…his own “home sweet home”, next door to his mother, sharing the same backyard!

His daily activities at the studio were varied: scrabble, puzzles of 1500 pieces, reading story books, writing letters, calculations, painting, embroidery of carpets and cushions, whilst also spending time with his mother as often as he could. He wasn’t able cook for himself, so his mother took care of his meals. He still misses someone: his father who he never forgot.

Uncle Jack was 30 years old when he was offered some form of employment placement, but due to there being no transport facilities, he was obliged to turn it down sadly.

He stayed with his mother until he was 46 which is when she sadly passed. Then his whole world came crashing down, because no other solution could be found for him to live independently (with support) and he had to leave his house which had to be resold and move to a center for disabled people. He suddenly found himself immersed in a world and a reality he hardly knew, having led a sheltered existence with his mother until this point.

After some health issues, he was able to adapt to his new life.

Since then, he has been able to receive his sister for weekly visits, except during COVID when they had to be he kept apart.

Uncle Jack has always had an excellent memory for birthdays, celebrations or happy times spent together, and he has always kept his sense of humour.

And he is the best uncle of the world,

I wouldn’t change him for anyone else!