Julie and Darcy’s story by Julie Fisher (DS Awareness Month)

Written by Guest Writer

October 16, 2021

Our story began in 2003 when I met a lovely lady Tina. Our eldest children were in the same grade together in primary school and we became friends very quickly. Tina has a daughter, Amy, who lives with Down Syndrome. When we first met, Amy was about 3 years old. I used to watch Amy in the play ground as Tina and I chatted and I would ask all sorts of questions including what it was like when they were told Amy had Down Syndrome.
It’s funny how the universe gets you ready for things that aren’t even on your radar yet.

Fast forward to 2005 when I became pregnant with our third child. We already had 2 boys and the age gap would be 6 and 9 years. I wasn’t worried about the age gap, and thought the boys would really enjoy having a little baby join our family. During the pregnancy, I had the usual blood tests and ultrasound in the early stages. When I had the ultrasound, the person doing it, kept measuring the back of the neck of my baby. He did it over and over. Thanks to Tina, I knew this was a marker for Down Syndrome, so I asked him if he thought my baby had DS. He told me he couldn’t tell me for certain and I would need to have further testing if I wanted to know. 

When Tina shared with me how it was for them when they found out about Amy’s diagnosis, I decided then and there during the ultrasound, that I wanted to know before my baby was born. I went home and spoke with my husband and we agreed that we both would like to know so we could also let our friends and family know before our baby was born.
I didn’t want people coming into the hospital to visit us crying because our baby had Down Syndrome. So, that is what we did. I went to an obstetrician (one who I had seen for my older boys) and he did an amniocentesis. By this stage, I was 15 weeks pregnant so he decided he would rush the results and give us a call the next day. We completed the amniocentesis which was one of the strangest things I’ve ever had done. It felt as though part of me was being extracted from my belly. I knew my baby was safe because he was right over on one side so there was a big pocket that was free for the fluid to be extracted.

We got the call the next day, and even though I was expecting him to say my baby had Down Syndrome, it was still a shock when he said the words to me. He was so sorry and had no positive words to say and I think that may be why, I felt so sad when he told me. I proceeded to tell him it would be ok and my baby would be fine. We knew he was healthy and that was enough for me.
So, we told everyone and we did all still go through the emotional rollercoaster but it was fine. 
Tina ran a support group which I started attending immediately. I booked in with a paediatrician I knew straight away and also booked my baby into early intervention from when he was born.
We did also get confirmation that our baby was a boy, as you can tell by the way I’m writing. We decided to call him Darcy.

The support group was amazing and a safe place where I could ask the lovely mums I met all sorts of questions. I also got to meet their gorgeous kids all ranging in ages from 1 to about 7. It was really wonderful to have so much support around me while I was pregnant.
So the months went on and I was feeling very confident having asked many questions and completed a lot of research to get ready for this bundle of joy that was going to be joining our family.

Julie & Darcy

Darcy decided he couldn’t wait until 40 weeks gestation and joined our family when I was 35 weeks pregnant. I was worried because we knew he was so tiny and I was worried about his lungs not having developed properly. I needn’t have worried because he came into the world like a rock star letting everyone know he was here. Here he was, our special little man with an extra chromosome and when they placed him on my chest, I was smitten. He was just beautiful. I was worried about the moment I would meet him but I didn’t need to.
He was welcomed to the world by all our friends and family the same way as his brothers were. Full of happiness, joy and love…just as we all wanted!

Darcy was very healthy, but he did have a problem swallowing and we found out when he was 3-4 months old that he was aspirating all the milk I was giving him. It was a very frightening time and I was so worried we would lose him because by the time we discovered what was happening, his lungs were quite full of fluid and he wasn’t breathing properly.
We spent the next few months in and out of hospital and Darcy was placed on oxygen to help repair his lungs. We eventually had a PEG (or GTube) inserted and that was how he drank for the next 13 years.

As Darcy grew and we got closer to nursery and school age, we decided we would like him to try mainstream schooling. I loved the specialist school system, so we decided to do dual schooling and Darcy was able to attend both for his primary years. He went to the same nursery and primary school as his brothers and also attended specialist school.
This time was amazing and full of acceptance and inclusion. He was able to attend all the specialist days at the mainstream school like sports and swimming carnivals, he went on all of the excursions and also attended all 4 camps from Grade 3 to Grade 6. He was part of the Grade 6 play and attended all of the graduation ceremonies. It was wonderful and we again, had the best support in place that assisted him and the school as a whole. We did have to advocate for him on several occasions but the outcomes were always positive.

Darcy is now 15 years old and attends specialist school full time. He is a very active young man and loves playing basketball, ten pin bowling and also does all abilities dance. He enjoys going to concerts, the theatre and trying new things. He’s becoming a bit of a dare devil like his mamma.
I am so proud of him and support him in everything he does. If he wants to try something, I make sure he is given the chance.

He has also been the inspiration for the two books I have written. The first one was written in 2019 and is entitled ‘The Unexpected Journey’, Embracing the Beauty of Disability and tells our journey with our little man. The second is hot off the press and recently released over the last couple of weeks. It is entitled ‘The Magic of Inclusion, Give People A Chance And Watch Them Shine’ and talks about the importance of acceptance and inclusion. I also share what it is like even when you go the shop and people stare, point or make remarks and why they should be aware of what they are doing and how it makes us feel. I am very passionate about raising awareness for my beautiful boy and his friends. I also want to help other families and give them the tools to get their children out and about without worrying about what others do or say.

It hasn’t always been easy and we have had many times of worry, but we work together to help our boy be the best he can be and we love seeing him accomplish things and reach milestones.
We, like many others, do the best we can.
My favourite things about Darcy are the way that he lives his best life and enjoys everything he does whether it’s for the first time or even if he has done it several times. I love how kind and compassionate he is and also how funny he is. He is cheeky and loves to stir up his brothers.
He is a 15 year old boy that happens to live with Down Syndrome, but it definitely doesn’t stop him!


  1. Tina Naughton

    Beautifully written Jules.. as always.❤️

    • Erika Petrie

      Thank you for your kind comment Tina…much appreciated!


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