Every few days about half-a-dozen people with Down Syndrome visit the hotel leisure centre I used to frequent before coronavirus closed it yesterday. They are cared for by three volunteers who transport them there and back, help them get dressed, which seems to take an age, and then support them while they play in the water.
It’s clear from the shrieks of laughter that for these men and women with learning disabilities this is a highlight of their week. Whenever I see them all I can’t help but admire the utter selflessness of the volunteers who are offering real intense personal support of the highest order. I’m sure it has its rewards but it must be so physically, mentally and emotionally draining. To me people who do this kind of volunteering are real heroes.
Others who attend the leisure centre are pleased they visit but, myself included, frankly struggle to know how to engage with our twice-weekly visitors.
Today March 21st is World Down Syndrome Day, the global awareness day which has been officially observed by the United Nations since 2012.
The date chosen is highly relevant being the 21st day of the 3rd month which signifies the uniqueness of the triplication (trisomy) of the 21st chromosome which causes Down Syndrome.
One of my work clients supports Down Syndrome sufferers so I’ve learned a bit about it recently. It’s a genetic disorder usually associated with physical growth delays, mild to moderate intellectual disability and characteristic facial features.
The average IQ of a young adult with Down Syndrome is 50, equivalent to the mental ability of an eight or nine-year-old child, but this can vary widely.
The parents of the affected individual are usually genetically normal. The probability increases from less than 0.1% in 20-year-old mothers to 3% in those of age 45. The extra chromosome is believed to occur by chance, with no known behavioural activity or environmental factor that changes the probability.
There is no cure for Down Syndrome which is the most common chromosome abnormality in humans. It occurs in about one per 1,000 babies born each year. In 2015, Down syndrome was present in 5.4 million individuals globally and resulted in 27,000 deaths.
The randomness of the condition, how widespread it is, the selflessness of volunteers and the sufferers’ families means I can think of few more worthy charities than those that support Down Syndrome.
It’s also a cause that’s simply not sexy enough to get the backing it deserves in the crowded, competitive charity world. I doubt that will change this year what with coronavirus overtaking all other concerns but hopefully today will go some way towards raising awareness of this devastating condition.