Co Antrim mum spreading hopeful Down syndrome message
A Co Antrim mum is helping to spread a positive message of support for new families with babies diagnosed with Down syndrome, ahead of World Down Syndrome Day.
Ciara Smyth’s son Jacob was born nearly two years ago and, at that stage, the family felt that they could not find the local support they needed.
“A lot of the medical professionals were lovely and supportive in their demeanour, but there was no specific place you could go to or people you could speak with an you weren’t put in touch with anybody,” she told UTV.
It was during her research that Ciara came across the ‘Congratulations Book’ put together by the charity Pals in the US.
It contains handwritten letters from young people with Down syndrome about their lives, and in particular how they are full of hope and happiness.
Ciara felt that this was the perfect message for her family and others like them.
“In those letters, they talk about how amazing their lives are and what they’ve achieved and how happy they are,” she said.
“And they tell parents don’t worry about your new baby, they’re going to be amazing.”
Having founded the charity Joy 21, she was allowed by Pals to include the ‘Congratulations Book’ in packs she puts together to post out to families, which also include a list of local support groups.
Mum Sara McNeill said she contacted Ciara when her son Tom was born to ask for a Joy 21 pack to be sent to her.
She said that, as a new parents, it was amazing to read the joyful letters.
“I think whenever you get surprised with a diagnosis like Down syndrome and you don’t know much about it, all you really want to know is that your family’s going to be happy and that you’re all going to be okay,” she said.
“And, do you know what, what I’ve learned this year is that it’s more than okay. But in those early days, that made such a difference to us as a family.
Joy 21 packs have been given out to numerous families over the past year by the maternity units in the Ulster Hospital, Antrim Area, and the Royal Victoria.
Neonatal nurse Katrina Wilson, who works in the Ulster Hospital and has a five-year-old daughter Willow who has Down syndrome, says the Joy 21 packs have been much welcomed.
“There wasn’t much medical jargon which not a lot of people want really when they have a diagnosis of Down syndrome for their baby,” she said.
It is hoped all maternity units in Northern Ireland will eventually provide the Joy 21 packs at the time the family receives a diagnosis of Down syndrome, so that they have as much support as possible.
Ciara also hopes to gather letters from young people in Northern Ireland who have Down syndrome, so that she can compile a local congratulations book.
“We’re slowly edging that way” she said.
“I think even if we could get a couple to begin with to go along with the book that’s there and then to eventually make our own would be lovely.”
World Down Syndrome Day 2021 is on Sunday 21 March.
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