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I am an advocate on the National Advisory Council in Down Syndrome Ireland. We call it the NAC for short. (You can learn more about the NAC here.)

I am the PRO on the NAC. We are the voice of people with Down syndrome.

We give our input to Down Syndrome Ireland on different topics. We discuss things like transport, mental health, cost of living, and independence. We work on projects to improve things for people with Down syndrome.

I have been living independently for a year now. I love it. I couldn’t believe it when I got the keys!

I like the freedom to go out and travel by myself, not having to get lifts off anyone. I had to learn a lot of new skills when I began living independently – the biggest challenge is changing the bed sheets!!

It is great to have the independence to cook and meet friends and do what I want to do!

If people with Down syndrome want to live independently, I want them to never give up hope. It took me a while, it wasn’t easy.

Now I am living independently and I am so happy.

I hope that everyone with Down syndrome lives their life to the fullest. I do and I feel so fulfilled now that I have reached my goal of living independently!”

Gina Daly found out she was pregnant with her son Gene on March 21^st, not aware that it was World Down Syndrome Day at the time.

After Gene was born, her “rainbow baby with an extra colour”, she discovered how significant that date was; “It all made sense to me then, so now we celebrate Gene and all our friends and also celebrate that very special time finding out that we were expecting him”. Before Gene was born, Gina hadn’t known anyone with Down syndrome in person, just online; “it’s so lovely to have a community or people to share all of our experiences.”  

When Gina meets families out and about who also have children with Down syndrome she finds a sense of community; “just to have that community, for us all to celebrate at the same time, our amazing children, it’s just fantastic”. Speaking on her online following, Gina receives a lot of DMs from parents; “there’s been quite a few mammies who are due to have babies… I tell them you’ll never ever feel, and I can say from the depth of my soul, a love like it,” some of the mammies then go on to send Gina pictures of their babies when they are born and the mothers message “I understand now what you meant, that love, that feeling” and Gina finds it very “special to watch those babies grow up and its very special to be able to say to people ‘it’s going to be ok, you’re going to be absolutely fine, if not better!”.  

Gene benefitted from early years supports in their local Louth Meath branch; “we got a really invaluable service, it was the early years intervention which prepped Gene for playschool and he is thriving now, he is doing absolutely fantastic”. 

Stephen Faley is the co-chairperson of the Regional Advisory Council. He has an interest in politics and recently completed a retail training programme in Primark/Penneys.

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My name is Stephen Faley. 

I am a member of the Kerry Down Syndrome Regional Advisory Council. 

My role in the Regional Advisory Council is Co-Chairperson. 

On January 16^th I welcomed Sean Kelly, MEP to the Kerry Down Syndrome Job Ready Group. 

All the students asked questions about his work in the European Parliament; 

I was proud to be Co-Chairperson because I had the task of starting the Kerry Regional Advisory Council Meeting. 

I am interested in politics because there are things politicians need to help us with. 

I have learned these skills In Latch-On and My Opinion my Vote and in Work Skills. 

I had a 6-week work experience placement in Primark/Penneys, Tralee before Christmas 2025.  I hope to work there again because I liked my work experience there.

Anthony loves working and enjoys his job at Global Ireland. He is responsible for shredding posters, which allows them to be recycled and used again. He’s made some great friends at work, too! ‘They are all my friends in work,’ he says, which makes his job even more enjoyable.

Outside of his job, Anthony is a talented artist. When he’s not working, he enjoys spending his time creating new works of art.

‘My day off, on Wednesday, I stay at home and colour.’

He attends regular art classes in Dublin to enhance his skills and explore new techniques. One of Anthony’s artworks is proudly displayed at Down Syndrome Ireland’s national office.

Anthony also loves to travel and explore new places. He recently went on a trip to Transylvania with his sister, Annette, where they visited Dracula’s castle and even had an encounter with a bear! He’s already planning his next trip, saying,

‘My dream is to see Liverpool again and travel.’

Anthony proves that you can have a fulfilling job, do what you love, and explore the world! We can’t wait to see what he creates next and where he goes! 

Orla is an incredibly talented and successful person, who always dreamt of being on the big screen! ‘When I was a child, growing up, my dream job was to be an actress, I eventually got that dream.‘

Speaking about where their love of acting came from, Orla said,

‘The reason why I love acting is to bring joy to other people who like seeing people on stage or on TV and film. I started very young. I was in school plays.’

Orla has since gone on to star in multiple productions such as RTE’s Clean Sweep, Netflix’s Bodkin, and the film Aretha, and has worked alongside stars Barry Ward, Charlene McKenna and Fionnuala Flanagan.

When Orla isn’t busy on set, they are advocating for the rights of people with Down syndrome. Orla is a part of the National Advisory Council (NAC), a panel of adult members who guide Down Syndrome Ireland. They campaign and advocate for people with Down syndrome across the country on issues including transport, voting rights, employment and education. Speaking about the NAC, Orla said,

‘We talk about different topics such as mental health, voting or housing, and why that’s important.’

Orla is a huge advocate for inclusion, stating that

‘inclusion is important for everyone regardless if you have a disability or not, it’s just being accepted. Even though some people don’t understand Down syndrome, just put yourself in our shoes and think of how important it is to be included.’

We’re excited to see what amazing things Orla will do next, both on and off the screen!

Dylan is a dedicated and hardworking man, who loves working and has not one, but two jobs!

‘I have two jobs, in the Maldron Hotel and UTS’.

Dylan works in a restaurant in the Maldron Hotel, serving customers and helping keep everything tidy and running smoothly. He also works in UTS Technologies, where he works closely with parking meters and test tokens to ensure they’re all functioning correctly. When speaking about his colleagues at both workplaces, Dylan said,

‘My team and colleagues are perfect, helpful and nice’.

Dylan’s employment was facilitated through the support of Down Syndrome Ireland’s employment team. He also regularly attends Skills Academy at the national office, where he receives guidance on developing essential work skills.

‘Every Wednesday, I am in Down Syndrome Ireland for Skills Academy, [which] teaches me about work skills. The employment team, they [help with] looking for a job’.

Beyond his professional life, Dylan loves singing, dancing, and music, with a particular love for the boyband JLS.

‘I love going to dancing, I like to do singing, I would like to meet JLS’

Dylan’s dedication and positive attitude are truly inspiring, and we look forward to seeing the continued success he achieves in his future!  

Maisie is a kind and caring little girl, who is full of life! She loves to laugh and play, and her smile can light up any room!

When Maisie was born, she had a hole in her heart, which was a worrying concern for her parents. She initially struggled to put on weight and had to be fed through an NG feeding tube. Maisie’s mother, Emer, describes her as ‘resilient’, and at just three months old, Maisie underwent heart surgery, which was a success! 

Seeking advice and support in those early days, Emer reached out to Down Syndrome Ireland and connected with Annette O’Neill, our Member Support Officer,

 ‘I had heard of Down Syndrome Ireland. I reached out, I was talking to a lovely lady Annette. She gave me such lovely advice, she was very kind and reassuring.’

Now at 4 years old, Maisie is thriving and keeps her parents on the go with all her fun adventures! They are determined that she follows her dreams and pursues her passions as she grows up and they will support her at every step of the way.  

Their dream is for Maisie to always be happy, and they hope everyone will see how amazing Maisie is and not underestimate her or any other people with Down syndrome. They want everyone to know that Maisie and her friends are capable of anything!

‘I do dream that other people will see beyond her disability. Don’t underestimate Maisie or her peers, they are so capable. I am really really excited about Maisie’s future’, says Emer.

We can’t wait to see what amazing things the future has in store for Maisie!