Down syndrome affects people mentally, developmentally, physically, emotionally, socially, and financially.
The first thing that may strike you when you see someone with the condition is the face. People with DS often have a characteristic facial appearance. Please see more details in the images attached.
People with Down syndrome are more likely to be overweight than the general population. However, with increased knowledge on diets, noticeable improvement is being made to reduce this tendency.
Other things to look out for are sight and hearing problems, hypothyroidism, gut defects, and, above all, congenital heart defects in babies. Most of these can be managed.
Most people with DS struggle with learning disability. They may have less IQ than expected, which makes education a challenge but not an impossibility.
Developmental delays may affect them cognitively, in speech, and in the attainment of all milestones.
Emotional and social upsets come with discrimination, which is common, especially in Africa.
Down syndrome may affect the individual and his or her parents financially because of the high cost of care (especially in countries where the government does not take responsibility for their care). In some cases, parents spend more time at home providing work than at work.
In all, the quality of life a person with the condition lives is influenced by his environment and the availability of resources to cater to his needs.
World Down Syndrome Day (WDSD) comes up March 21, every year.
It may also interest you to know that WDSD is an Initiative which has the full backing of the UN, Syndrome International and national charity organisations across the world.
This is one of the reasons March is special to us at the Engraced Ones because we are privileged to be part of this global drive towards awareness creation
Why March 21?
October is set aside for DS awareness. However, we can’t resist the temptation to set the ball rolling now. March 21 was specifically chosen for the celebration of people with DS because March is the 3rd month in the year and these unique individuals have a triplication of a certain chromosome. The chromosome in question is chromosome 21.
‘End the Stereotypes’
This year 2024, the theme for the celebration is exciting! End the Stereotypes is a theme that speaks loudly to us as advocates. There are more stereotypes about the condition than the facts. It’s a shame that people tend to see and think about these stereotypes the moment they come across a person who lives with DS. Please put some stereotypes you know in the chat box so we can engage!
Now, you may want to know, what is Down syndrome?
Down Syndrome is a genetic condition where a person is born with an extra chromosome. The differences in the physical and mental disposition we notice in these individuals is because of this extra chromosome.
Please stay with us as we take you through a 21 day journey of demystifying the condition and shattering stereotypes.
I met Karibi through her hubby. The first time I met the couple I noticed the sharp contrast in their appearances and compartment. While Jim seemed cool and calculated, Karibi was obviously jittery and withdrawn.
Jim had a lot to say about his wife. He felt he could no longer relate with her. He felt she was too concerned about their 6 year old son who lives with a condition called Cerebral palsy. He couldn’t remember when last they had a laugh together or just went out for some ice cream or had romantic moments. Hours of interaction revealed that his concerns were actually the least of hers.
Karibi was a beautiful and fashionable lady with high spirits. Anyone who knew her got a dose of her friendliness and confidence. All these changed when Tonye came into their lives. Their son missed all his milestones and seemed unnaturally stiff. After bags of money and several visits to doctors, the child was diagnosed with Cerebral Palsy. Though a common childhood disorder, it is arguably the most expensive congenital condition to manage and affects movement, muscle tone or posture. Cerebral palsy is due to abnormal brain development, often before birth.
It is little wonder that Karibi is on a path of depression following her motherhood journey with her adorable. The rejection she faces from close family and friends, the mental enstrangement she felt from a husband who didn’t understand the pain she felt each time people starred at her and her baby while whispering to their children to stay away from her, was enough to distort her mental health.
In the year 2023, the UN declared ‘Mental health is a universal human right’.
I’m trying to wrap my head around the above statement. Are they mere words or values which should be engrained in the society?
At what point in the history of man did mental health become a ‘global concern?’
Before I continue, lets all be sure we’re on the same page.
‘Mental health includes our emotional, psychological, and social well-being. It affects how we think, feel, and act’ this definition was adopted from Google. From this definition, I dare say mental health are all encompassing and subtle and there is no single cause of it.
There’s nothing as dangerous as a problem that starts without anyone taking note of it.
So I work with a group of women who manage children with special needs. At one point or the other in their interaction with their children they are likely to experience mood swings which may impede on their mental health.
Isn’t health meant to be for all? If mental health is a functional human right why wasn’t there anyone to observe the distress, isolation, absence of self – care, sadness and hopelessness of victims like Karibi before she experienced a total mental breakdown?
It is hoped that with increase in these conversations and with focus on the rights of Persons with mental health issues, there would be a decline in the statistics of victims of depression and related conditions.
So, young representatives from the School of Grace (a special needs school), Gracelane Miracle Inclusive School and Safehost International Initiative and as well of members and friends of the Engraced Ones were out on the streets of Kurudu, Abuja to talk inclusion!
You won’t believe there’re so many people out there who have no idea what disability (that is not physical) means.
We trust in these young souls to bring the much needed change in Nigeria.
The Hakimi of Kurudu and the leadership of the palace are an example of a supportive society
Our young representatives creating awareness for inclusion of persons with special needs
There years ago my friends and I at the Engraced Ones through the support of several others who weren’t with us physically, surprised 56 families by taking Santa Claus to their homes. Love compelled us to transverse all the Area Councils in Abuja.
Last year we visited several families and presented carols in their homes. Some of the children needed some form of scholarship in 2023 and hey, did this idea yield results? Yes it did! We were able to get uniforms and other stuff some children in the school needed through donations to the choir.
So what’s new this year?
The Inclusive Graceful Club is going International!!! We’re storming several homes ACROSS THE WORLD with our virtual choir🌎 on 14th December, 2023.
Please join us via this link; https://fb.me/e/3ltN9NEZd
2pm WAT (2pm friends in Nigeria) 8am EST (8am friends in the US)
