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.
Katy says: “Because Matilda is in the middle of our family, it did create an interesting dynamic, especially when the twins came along”
She smiles: “Chaos reigned for five or six years. For Amelia and Dugald, Matilda was always just part of the family. Matilda struggled at first when the twins arrived, but what was really interesting was how they understood very quickly what was happening.
“Even before she could properly speak, Flora would see Matilda trying to climb over the garden wall and start yelling frantically for me.”
Flora recalls: “I saw in a photo that Matilda didn’t really like me or Sonny when we were first born. In the photo Matilda was glaring at us. I think it was because she didn’t understand who we were and was kind of scared.
“I enjoyed going to school with Matilda - on my first day I was a bit nervous, but it was okay because Matilda was looking out for me.
“She would always make me feel a lot better when I was sad and she was very fun to play with at break time.”
Flora taught her big sister to ride a bike.
“She is now very good at it and I am very proud,” she says. “I used to need to hold her all the way round the field which was very hard.”
“I really like going to gymnastics with Matilda though sometimes she embarrasses me, like when she wears shorts which she pulls up way too high.
“The best things about having Matilda as my big sister are - she is always willing to play, wrestle, sing and dance and loves playing pranks.”
Amelia agrees: “I didn’t think our family was any different to begin with. We went to a small primary school and everyone knew Matilda. It was only when I got to high school and heard the way some people talked about Down’s syndrome that I was a bit taken aback. It really upset me at first.
“Being Matilda’s sister has definitely opened my eyes to disabilities. If I see someone with a disability being left out or treated badly, I’d go over to help.”
She smiles: “We’re alike, Matilda and I, but I’m quite shy and reserved and Matilda is the opposite – she can talk to anyone and I’d love to be able to do that. I wish I was more like her.”
Matilda says: “I have great sisters. I look after them. We do lots together, but my favourites are singing and baking cakes.”
Katy says having her sisters around has given Matilda a degree of freedom she might not otherwise have had.
“They love going to gymnastics together, and are all members of Ups and Downs Theatre Company, which is fantastic, and they recently went to see One Direction in concert,” she explains.
“There are challenges that come with having a child who has Down’s syndrome, but that’s not something we want pitied for. We just want people to have a level of understanding that it can be hard, not just for Matilda, but for her siblings, who deal with it in their own ways.”
Katy adds: “People still make a huge fuss of Matilda when we are out and about and that was particularly hard on the twins when they were wee.
“She got to sit on the driver’s seat on the little train in the park, ‘helped’ the crew and met the pilot on our flight home from Italy last summer and inevitably the other sometimes wonder why they don’t get the same treatment.”
“My over-praising of Matilda’s achievement in sleeping in her own bed all night prompted Flora, when she was seven, to say ‘I sleep in my bed every night and you don’t tell me how great I am. Why am I not your special girl?
“As parents we try hard to get it right for them all but invariably we miss out sometimes.”
She pauses. “But really, our life is about remembering that the all the challenges are far outweighed by having Matilda in the middle of our family.”
Down’s Syndrome Awareness Week runs until Friday. To support the charity, donate by texting DOWN21 £5 to 70070, or take part in the Lots of Socks campaign by wearing colourful socks to school or work in return for sponsorship. Last year’s event raised £16,000.
Find out more at www.dsscotland.org.uk