World Down Syndrome Day: I want people to know how amazing these kids are
Harry and Sophia Brassel.
When Orla Brassel found out she was expecting a baby with Down syndrome, her world opened up. Thanks to a supportive medical team and a slew of journals and studies relating to children born with trisomy 21, the extra chromosome that Harry carries, the social media manager quickly became overwhelmed with the sheer volume of medical information. In the most unlikely of places, Orla found support and hope.
“Instagram turned out to be my saviour,” she laughs. “All the medical information was so clinical and everything was worst-case scenario, which was, I felt, really limiting. On Instagram, I was seeing real life and in real-time, these insights into people with Down syndrome’s lives. These families were so happy, the love was nearly pouring out of the phone. It was amazing. Their lives were so beautiful and focused on the kids and the joy they brought.”
Orla is one of a group of Cork mums who come together each year to help the voice of people with Down syndrome, and those who live and work with them, grow louder. This year, have launched a collection of 5 styles of t-shirt, available to buy at personaliseme.ie. The t-shirts are available in adult and child sizes and aim to champion inclusion and as Orla says "shout the worth of our kids in order to support the wellbeing of individuals with Down syndrome".
Harry is flying it, says Orla. "He started walking during the first lockdown and he hasn’t stopped moving since! He started preschool this year and splits his week between his early intervention service provider and his sisters generic preschool. His little personality is really starting to shine and he is the life and soul of our house... when his sister allows him of course!"
Claire Foley found out her son James carried the trisomy 21 chromosome when he was born, three years ago. In the face of health difficulties that resulted in James undergoing open-heart surgery in Crumlin hospital at four-and-a-half months old, Claire says the diagnosis of Down syndrome was never really a big deal.
“I have felt, since day one, that Down syndrome isn’t something to be gotten over — James is James and he is perfect as he is,” she points out. “James has strawberry-blonde hair and blue eyes and yes, he has Down syndrome, but it does not define him. We see our children as superstars and the future is theirs for the taking. We hope we can pave the path and teach people our kids as much as any others can reach their full potential in life.”
In a world fraught with political correctness, Claire wants people to ask the questions they have. “We didn’t know anything about it until James arrived, so we understand. As parents we are here to educate and we try to let people know more about our kids, so ask away!”
Niamh McKenna calls her daughter Lily her little pocket rocket, saying she slotted into place with her two older brothers as though she had always been there, bringing her own brand of rough and tumble to the previously male-heavy household.
If Niamh had a soapbox this World Down Syndrome Day, she would use it as a means of reassurance for those parents who have recently received a diagnosis of Down syndrome. “Pick up the phone and ring Down Syndrome Ireland, because they’ll put you in contact with these wonder-women who have been through it all before. Suddenly you have this whole new life surrounded by fabulous people. There is no negativity, we are all enjoying the ride together.”
Jean Foley says her daughter Emma is all that she could wish for, and she hopes this World Down Syndrome Day, everyone sees what she does. “She is strong, brave and has the most infectious smile that not only lights up her face but the whole room,” says Jean. “She is known for her cuddles, great smiles and of course her hair. She is the same as any other little girl. We hope people see that. Life is so much better with her. I am so proud to be her mum.”
Joan McCarthy is mum to Donal and her mission is to teach people to see beyond the diagnosis to these extraordinary children. “Donal is an amazing, loving, cheeky, funny, happy boy who has added so much to our lives. I want people to see beyond his diagnosis and see him for the toddler that he is. He is everything to us, we wouldn’t change a thing.”
The last year was quiet for the family, as they drew together to keep him well. It was not without good news though! "He got a new brother in June 2020 who he adores," says Joan.
The Down syndrome community is worldwide, and thanks to social media it is more accessible than ever, says Orla Brassel.
When five mothers come together in the name of their children, something powerful will always come out of it. For Orla, the message is simple. “I want people to know how amazing these kids are. They are no different to other kids, they just have an extra chromosome — that’s it. They are just different, they are not less.
- Buy a t-shirt in aid of World Down Syndrome Day at Cork-based personaliseme.ie until the end of March.
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