Ennerdale resident Constance Connies and her daughter Celeste at the National Down Syndrome Day, designated by late President, Mr Nelson Mandela to create awareness about Down syndrome. Pictured on 20 October 2020 at Eldorado Park in Johannesburg. Picture: Nigel Sibanda
On 20 October 2020, the Eldorado Park community and surrounding communities commemorated National Down Syndrome Day with a march in support of children who live with disabilities and families who have lost children with disabilities.
The march was initiated by the Caitlin Douman foundation, which was founded in November last year to support children living with disabilities in the Eldorado Park community and neighbouring communities such as Lenasia and Ennerdale.
Marcelle Daniels, president of the foundation, said they supported families with children who have disabilities, because as a mother she could relate to these parents and guardians.
“My later daughter Catlin suffered from cerebral palsy, on Sunday 26 October 2020 it will be four years since her passing.
“We try our best to support the families of children with disabilities in the communities by having food drives and educating them on how to cope with these types of children. We want our communities to know we understand their struggles.”
Daniels said since the passing of Nathaniel Julies several stakeholders have welcomed the foundation and reached out to support them.
She said the future for the foundation would include expanding to different communities in Gauteng, in order to reach more families with children who have disabilities.
Constance Connies – the mother of Celeste Connies – who was diagnosed with Down’s Syndrome when she was born in 2000, said it is a challenge sometimes to understand Celeste’s needs.
She said as a mother she would not exchange her daughter for anything in the world, because her daughter is God’s gift to her and her family.
“When Celeste was born my husband and I spent months visiting a doctor who educated us on Down’s syndrome, because we knew these types of children required special needs. Celeste still finds it difficult to read and write but she excels in other talents such as arts and crafts. She enjoys working with her hands and creates stylish bracelets,” Connies said.
The Citizen also spoke to Leah Parks – the guardian of Thabang Moemapa – who is a 15 year old boy with Down’s Syndrome.
Parks said Thabang’s mother passed away when he was a baby and she decided to raise him as her own.
She said raising Thabang has been a challenge at times, but she has managed to learn ways to cope with his behaviour.
“If you do not have the heart to work with these children you will struggle to understand them. I’ve realized that I can not speak in a harsh tone to Thabang, because it will scare him away. Thabang also enjoys helping me clean around the house, so I often delegate him to do chores. It keeps him busy and makes him feel good about himself,” Parks said.
Parks said Down’s Syndrome children were children who loved people and wanted to be loved in return.
According to the 2019 South African Statics, one in 1,000 babies born in developed countries and one in 650 babies born in developing countries is affected by Down’s Syndrome.
The syndrome is the result of a chromosomal disorder arising at conception. There is an extra number 21 chromosome, which causes delays in physical and intellectual development. 80% of children affected by Down Syndrome are born from mothers under the age of 35.
sonrin@citizen.co.za
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