We always strive to ensure that the name of our brand is also best reflected in our actions, so we were delighted to include VDC POLŽ Maribor among our business partners. VDC Polž is a work centre for special-need adults. They are very creative and love handmade crafts, so we happily collaborated with them. Their skilful hands sewed our new collection of organic cotton tote bags.
Then we soaked the bags in the leftover natural dyes, and Neja printed them with inspiring quotes. Filip was eager to jump in front of the camera and pose with our new products. He is a protégé of the VDC Polž work centre and the number one assistant in our studio. He is always ready to grab a broom to tidy up our space or help with the dyeing process. However, the one thing he enjoys the most is photo modelling. So he was really excited to help us present our new products. And because Filip is diagnosed with Down syndrome, we want to share a brief description of that disease with you.
Down syndrome or trisomy 21 is a chromosomal disorder caused by an extra 21st chromosome. Delayed development is due to a chromosomal abnormality; an extra chromosome is added to the 21st pair. This defect is considered to be the most common chromosomal abnormality in humans. The incidence of the disease is between 1/800 and 1/1000 births. It occurs in all races. More children are born with Down syndrome in countries where abortion is not allowed and in countries where pregnancy is more common in later life. Regular gynaecological examinations and abortions have reduced the worldwide incidence from 2 per 1,000 to about 1.4 to 1.1 per 1,000 live births. In Europe, about 92% of pregnancies diagnosed with Down syndrome are terminated. As a result, people with this genetic defect are disappearing; in Denmark, only 18 children were born in 2019 with this diagnosis.
People with Down syndrome usually have intellectual disabilities. They have characteristic facial features, hypotonic musculature, hyperflexible joints, sensitive skin, sparse hair and a large tongue. Due to heart and respiratory problems, immune disorders or infections, they face a higher risk of early death than the general population. However, life expectancy has increased significantly after improved health care, especially for heart and gastrointestinal problems. Consequently, life expectancy increased from 12 years in 1912 to 50 or 60 years in the present day.
Between 5 - 15% of children with Down syndrome in Sweden attend regular school. Some graduate from high school, but most do not. Of those with intellectual disabilities in the United States who attended high school, about 40% graduated. Many learn to read and write, and some can even do paid work. In the United States, about 20% of them do some kind of paid work, while in Sweden, less than 1% get a full-time job. In Slovenia, most of them visit protective work centres. Many can live partially independently but often need help with financial, health and legal matters.
The condition is named after John Langdon Down, the British physician who described the syndrome for the first time in 1866. Because of his perception that children with this particular condition are similar in appearance to members of the Mongol race, John Langdon Down used the term “Mongoloid”. He believed that the existence of Down syndrome confirms that all people are genetically related. The racial nature of the name became a genuine concern with the discovery that the actual cause is chromosome-related. In 1958 Jérôme Lejeune discovered an extra chromosome on the 21st pair caused Down syndrome. Because of the three identical chromosomes, the condition is also called trisomy 21.
In 1961, nineteen scientists suggested that "Mongolism" had misleading connotations and that it had become a "shameful term". At the request of the People’s Republic of Mongolia delegation, The World Health Organization (WHO) abandoned this term in 1965. While the term mongoloid (including Mongolism, Mongolian imbecility, or idiocy) continued to be used until the early 1980s, it is now considered unacceptable and no longer commonly used.
People with special needs are often overlooked and pushed into the background, but we can’t pretend they don’t exist. So let us respect the diversity and variety of our society and seize the opportunity to learn from their perseverance, patience and compassion. People with Down Syndrome are the most sincere and honest beings who show us how beautiful, simple and priceless our lives can be. They bring laughter and warmth into the room and fill it with love. They deserve to be accepted just as they are with all their whims, specialities and qualities. 💛
