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Down’s syndrome Awareness Week: Matilda in the middle
Ann Fotheringham March 20, 2017
LIFE is busy for the Lironi MacIntyres.
There’s Amelia, 16, juggling schoolwork and her part-time job; 15-year-old Dugald and the twins, Flora and Sonny, who are 10.
And then there’s Matilda in the middle – 13 years old, lover of musical theatre, cake-baker extraordinaire, could chat for Scotland.
“Most of our family life runs at Matilda’s pace and agenda which can get very frustrating for her siblings – but it’s life,” smiles mum Katy Lironi.
Matilda has Down’s syndrome, a genetic condition caused by an extra copy of chromosome 21 inside some or all of the body’s cells.
It is one of the most misunderstood learning disabilities, which is why Down’s Syndrome (DS) Scotland works tirelessly to tackle the negative stigma and dispel the many myths surrounding it.
This year’s Down’s Syndrome Awareness Week kicks off today, incorporating World Down’s Syndrome Day tomorrow (Tuesday, March 21). The theme is ‘Don’t just see Down’s syndrome’ and aims to encourage greater inclusion in schools, the community and working environment.”
“World Down’s Syndrome Day has gone from strength to strength in recent years, which is really fantastic,” says Katy, who is a family support worker with DS Scotland.
Katy and her husband, musician Douglas MacIntyre, are also heartened by recent research by the Scottish Learning Disabilities Observatory, which suggests the number of women in Scotland who terminate their pregnancy following a prenatal diagnosis of Down’s syndrome, has reduced.
The study showed the number of terminations had fallen from just over 90% to 85.2 % between 2000 and 2011.
“It’s a small step, but a positive one and perhaps it does show that slowly, attitudes are changing,” says Katy.
One of the cornerstones of this year’s awareness campaign is about the relationship between children who have Down’s syndrome and their siblings.