Ollie’s Story – Feature Article – World Down Syndrome Day 2022 by Jo Sims

Written by Guest Writer

March 20, 2022

I’d like to share with you the best present I ever received; I just might not have realised it at the time.

Let me introduce you to my first-born child, Ollie.

Ollie is 10 years old now and was a much-wanted child. Myself and his father were both very excited to be having a baby. Like all first-time parents we were full of ideas of how things would be, what our life would be like as parents and how our child would be. It’s kind of an unconscious process that comes upon you.

At our 20 weeks scan it was discovered there were several serious concerns picked up and it was thought that our baby may have Down’s Syndrome. We were given the option of having an amniocentesis which would test to see if indeed this was the case.

Waiting for that result took several days and it was the most stressful time I think I have ever been through. I was scared and confused. Eventually we received the result that yes, our baby did have Down’s Syndrome and some health issues including a congenital heart defect, which would require open heart surgery very quickly after he was born.

We were also asked if we wished to continue the pregnancy. This is a very difficult and personal decision for everyone who is in this position. Ultimately for us, we didn’t think twice and continued. In fact, we couldn’t wait to meet our little man.

Ollie arrived and from the moment he was here, life was non-stop and has been pretty much since. He has overcome lots of health challenges including the open-heart operation at 4 months of age, sepsis and many other issues. Some are still revealing themselves now. We spent the first half of his life pretty much in and out of hospital and it has been really hard.

Like many children with Down’s Syndrome hitting milestones has been delayed and adjusting to a ‘new normal’, one we never predicted or planned for has taken a lot of work and getting used to.

However, for me as Ollie’s mum the moment he was born I experienced an overwhelming feeling of love like I had never known before. A sense of protection, pride and privilege. I won’t lie though; I did also go through a period of grieving which can happen with some parents as it is a big adjustment and realization that life is going to be different to how you imagined it was going to be in your head. There was also some trauma along the way with various medical procedures and that has been quite challenging for me, even though I was a nurse. Nothing prepares you for how this will affect you as a parent supporting your child and the emotions you will experience.

However, having said all that Ollie has totally transformed my life in ways I could never have imagined. I have been taken on this whirlwind ride by the most amazing tour guide.

A once small, fragile, vulnerable baby that I tried so hard to keep alive is now a strapping handsome full of life 10-year-old young man who is not far off my height! He has defied all the odds and predictions that were put upon him and crafted his own way to break down expectations and bust through barriers in his way. I really love that about him.

Ollie led me to become the founder and Chair for a period of time of a small local charity called Downright Perfect in Dorset, assisting other families with children with Down’s Syndrome. Through my experience as his mum, he also led me to train as a counsellor, coach and energy practitioner. I now combine all my skills and lived experience and run my own business called Joanne Sims Wellbeing. I specialise in working with SEND parents just like myself, assisting them in becoming emotionally stronger, more resilient and in managing their own wellbeing.

Ollie also paved the way for his brother and sister to arrive sometime later and they too have each brought with them, their own different unique gifts and challenges which also enhances who I am and enriches my life further.

I cannot believe he is now 10 years old and for all that we have gone through it feels like I have blinked and time has passed so quick.

I am so very proud of Ollie and I absolutely would not change a thing about our journey. Although looking back the start of our journey was hard, he was absolutely the best gift I could have received, I just had no idea how much I needed to experience this love, this life and this change to get to where I was.

He has brought so much joy to my life and the life of those he comes into contact with. He has made me a much better person. He is fiercely independent, strong willed, determined and has such a spark and zest for life.

He is the life and soul of the party and the room lights up when he enters. You will not find a more enthusiastic dancer, sociable funny lad and boy, has he got some moves!

He has led me to discover my life’s vocation now and I love what I do. Ollie has totally changed my vision and allowed me to see life in a much better way, in full rainbow colour and with a richness I never knew existed before. For this, I am eternally grateful and blessed.

I thank God every day that he chose me to be his mum. He is the best gift I could ever have wished for and I celebrate him and his siblings with each passing day!


  1. Gail Page

    What a beautiful photo of you both Jo. And your story is a testament to the love you both share. Loved it! 💖

    • Jo

      Thank you for reading Gail and for your wonderful comments. I do love him very much, he has really transformed my life for the better.

    • Erika Petrie

      We appreciate your feedback Gail and glad you loved their picture too. Jo sent me a few pictures of them both, but I knew that had to be the feature one…the love between mother and son just shines through in it!

  2. Rachel

    It’s a lovely story- Ollie is an amazing young man. As a sister of someone with DS I know how much joy, laughter and love he will bring to his siblings and help shape their life for the better too

    • Jo

      Thank you Rachel for your comments and insights. It is indeed a very special bond between siblings and as a mum something very special to witness.

      • Erika Petrie

        Thank you again Jo for sharing your story with so much compassion, honesty and love. It is wonderful and truly humbling to be part of your journey and be able to share everything you have been through here on our live blog. You are a wonderful mum and an ambassador for truth and I am proud to call you my friend.

    • Erika Petrie

      Thank you so much for your lovely comment Rachel. Ollie is indeed a special young man who has accomplished so much already and Jo described their journey so beautifully. Thank you again Jo for sharing your story. Rachel – would you be interested in sharing something of your story about your sister with us on this platform?


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