Down Syndrome NSW is this week’s match day charity partner for the Swans Friday night fixture against Geelong at the SCG.
The club joined forces with Down Syndrome NSW in 2021 as part of the Swans’ Diversity Action Plan and as part of the partnership work together to deliver on our commitment to make the club more accessible and to raise awareness and funds, to assist their important work.
Ahead of the game, some of our Down Syndrome NSW families share their stories about their journeys and the impact the organisation has had on their family.
BRIDIE'S STORY, written by Mum, Julie.
This story is about our now 17 year-old, fantastic, fabulous, Bridie!
Like a lot of mums nowadays, I had some prenatal testing when I was pregnant with Bridie. Nothing out of the ordinary was picked up and my pregnancy continued on as normal. Working in the medical field, I had lots of sneaky ultrasounds along the way and I found out we were expecting a little girl.
I went into labour early so we quickly got ourselves to the hospital expecting a C Section as she was in a difficult breech position. Our new little girl was in a hurry, delivered feet first at 1am before we even made it to surgery. After Bridie was born, I was very unaware that there was an issue. She was perfect in all of our eyes, and still is. The nurses suspected something though and our precious newborn underwent genetic testing.
Bridie was seven days old when we were abruptly told that our daughter had Trisomy 21. After this very poorly delivered news, my husband and I took a moment to gather ourselves in the car park. Fortunately, I had already been put in contact with a social worker due to the traumatic nature of Bridie’s birth. She helped us understand the situation better and gave us a red folder. She said, “When you are ready this will be of great help to you.” The folder contained lots of information that we referred to for many years. Most importantly, it contained a phone number for Down Syndrome NSW. It also provided early intervention options, general information about Down syndrome and how to claim for Centrelink assistance, the NDIS wasn't launched at this stage.
It took us a few months to make contact with Down Syndrome NSW, I guess I needed time to get my head around the situation. Once I did reach out, I found care and support on the other end of the phone whenever I needed it.
Bridie is a young adult now and of course we’ve had our up and downs as you do with any child, but throughout the journey I knew that Down syndrome NSW was there to encourage us and help make connections with other families in a similar situation. I’m so grateful for that little red folder, it opened up a whole new community of support and the chance to make some lifelong friendships.
Earlier this year, I happily accepted a role with Down Syndrome NSW as a member of the support team. I’m able to offer my learning and understanding to parents who are exactly where I was 17 years ago. Although no longer a red folder, our new Baby Welcome packs that I now get to pass onto families, are filled with the same love and unwavering offer of support when it is most needed.
LUKE'S STORY, written by Dad, Paul
Luke arrived in this world 24 April 1997, some nine weeks premature and is now a 25-year old young man who loves life and has taken us on a journey we could never have imagined. A few extreme lows but so many more highs and wonderful experiences. He really is a valued member of our family and his community, and our lives are so much richer than we could have imagined. We now live in Western Sydney, Mum – Judy, Dad – Paul and sister Sarah where Luke enjoys a full and varied program.
Just after Luke was born, I contacted Down Syndrome NSW thinking they may be a good starting point. They immediately arranged a local family with a young boy with Down Syndrome to contact me. We visited them in their home and that really helped us know what to expect and how we should start on our journey. This was hugely encouraging, and I found this, and many other contacts gave me valuable information to help me get to the next step.
It wasn’t long before Down Syndrome NSW called me and asked if I could contact a new family and similarly share our experiences. I was taken with how the family valued this interaction, and they stayed in regular contact until we moved from the area.
Down Syndrome NSW was such a support and valuable resource to us especially until Luke was into his school routine, and we had developed our support network. As Luke grew into young adulthood, I renewed contact to have Luke become in the over 18s, Up!Club!. As Luke needed additional support with his diabetes, I decided to take him to the Up!Club! activities as carer. I soon became a volunteer and more recently, this has led me to a new career in disability support.
I think back to some tough moments, like when Luke was born and weighed some 950 grams. The medical teams pulled out every stop to keep him alive over his first days, but he pulled through and went from strength to strength. Then when 4 years old he contracted Diabetes type 1, another challenge for us. Then when 10, he contracted Streptococcal infection and spent 2 weeks in intensive care, again nearly losing his battle more than once over the following 2-weeks, but he finally pulled through. These experiences make him our miracle man!
I knew very little about disability and Down Syndrome, when Luke was born and was quite unprepared. I had to learn many things along the way. We never know quite what to expect and that makes life interesting! But right from the start I found a wealth of support and a whole community in similar circumstances to me. I discovered how society has evolved from my old-fashion view of sending disabled children off too institutional care and that Luke could enjoy a full and rewarding life as a valued member of the community. We are reminded that we aren’t alone.
When I look back to when I found out my son had a disability, I anticipated it would be an overwhelming burden, but having been handed this gift, I set myself as ready to take on the challenge.
The thing I learn from Luke is to live in the present. He only cares about the now and leaves all the worrying and planning to me or someone else. He is non-judgemental and gives unconditional love. His hugs would melt the hardest heart. Luke loves life and is my mission – the reason to get out of bed every day and stay positive.
ELSDEN'S STORY written by Dad, Chris
I loved Elsden from the moment I first saw her. When my wife had her twelve-week scan it was like Elsden knew we were looking in and was waving her tiny arms and legs just for us. Having gone through the heartbreak of several failed pregnancies before this one, we breathed a huge sigh of relief when the doctor told us that our baby had a strong heartbeat and that she was "healthy and perfect". We knew next to nothing about Elsden at that stage except that we loved her.
As part of the twelve-week check up, my wife also had a blood test. The results of that blood test showed a high chance of our little girl having Down syndrome and subsequent testing confirmed this diagnosis to be true. Unsurprisingly, this news knocked me for six. I suppose it was natural to grieve the loss of the child I thought we were going to have but mostly my reaction came from a place of ignorance. Down syndrome was a complete unknown to me. I had never known anyone with Down syndrome, and I had no idea what life with Down syndrome was like. So my mind filled with outdated and incorrect stereotypes.
Thankfully we met with the hospital genetics counsellor who gave us an information pack from Down Syndrome NSW. This pack and the information it contained was a lifeline. By doing a lot of reading and talking with other parents of children with Down syndrome we soon learned that advances in medicine, education and acceptance meant our little girl would live a very rich and rewarding life and she would enrich the lives of those around her – something we now know with absolute certainty.
Getting the prenatal diagnosis was actually a blessing, as it gave us time to process the news and our emotions before Elsden arrived. Our initial feelings of disappointment soon passed, and we were then just as excited as any expectant parents would be.
After months of scans and appointments, the day of Elsden's birth was one of the happiest of my life. It was amazing to finally meet the little girl we had already learnt so much about. As she was born early and some of her levels were low, Elsden spent her first few days in the Neonatal Intensive Care Unit. Despite how ominous being in NICU may sound, the notes I was keeping on that first day end simply with 'not overwhelmed, overjoyed'.
As a Dad, one of the biggest challenges I found in those early years was getting used to people doing a double take or even staring when they saw Elsden. At times it feels like everyone notices there is something different about your child. However, once you move passed the urge to yell, you soon realise it's human nature for their eye to be drawn to that which they perceive as 'different'. And if people stare, hopefully they will see that what they perceived as different is actually not different at all. If people stare at Elsden all they will see is a little girl doing the things that little girls do.
Elsden is now 6 years old and I find it hard to believe that sadness and grief were my first reactions to something that is just one facet of the person she is. Yes, she has Down syndrome, but she is also like every other child her age. She loves pizza and ice-cream, she sometimes fights with her little brother and if we let her, she would happily spend all day watching Paw Patrol.
Elsden now attends school and has made friends all on her own. She is imaginative, social, empathetic and has a boundless love for those she is close to. She is flourishing and goes from strength to strength each day.
I would say to other parents expecting a child with Down syndrome that getting the diagnosis is the worst part. Once you have received that news, the worst part is over. You'll soon find out that most babies growing up with Down syndrome will lead ordinary lives. Just like you and me, all they need are the right supports and opportunities to reach their full potential. That is why reaching out to an organisation like Down Syndrome NSW is so important. That is where you can make valuable contacts and get reliable information.
For us, as vital as the prenatal and new birth support was, it was just the first step in a lifelong journey. As we move forward, it is reassuring to know that at every stage of Elsden's life Down Syndrome NSW will be there with the support and resources to ensure she lives a meaningful life as a valued and contributing member of her community.
Writing this now, I know my words cannot do justice to all Elsden is and all she brings into our lives. She is still just as the doctor first described her at that twelve-week scan – healthy and perfect.
HENRY'S STORY, written by Dad, Kieran
Back and forth, back and forth. I watch Henry’s infectious cackle and smile move towards me and away as I push him a little bit higher. I cannot help but laugh with him. Soon his laughter makes the other parents around smile and laugh. It is his first time on a swing by himself at the park and he is loving life. I can’t imagine life without him. Recalling the events of his prenatal diagnosis is always difficult. Time and the sharing of stories paves way for healing and making sense of difficult periods in our lives. I hope my experience will be able to help other families to navigate the uncertainty when receiving a diagnosis of Down syndrome.
Three simple words had caused so much heartache and pain. "I'm so sorry". At that point my world froze. The doctor continued and rattled off on medical condition after condition. Each sentence compounded the unease in my mind as he bookended each statement, repeating those same three words. Each a punch in the gut and an assault on the mind. My wife, Jenny, and I left what we expected to be a routine 12 week scan in tears. We were deflated and broken. What were we to do? We were painted an image where our lives centred around constant medical appointments and chronic health problems. We were told our baby would be extremely sick.
A week went and a follow up test repeated the same result of the pregnancy being high risk. Again, the words “I’m so sorry” from the same doctor. Retrospectively, when I think about it, it wasn’t the diagnosis that was upsetting. It was having someone speak about your growing child as if they were a burden. Diagnosis or none, the baby was always wanted.
We were able to get a balanced view and gain insight into the reality of lives lived with Down Syndrome when Jenny contacted Down Syndrome NSW. The voice over the phone gave us hope and clarity. Miriam shared stories of her parental experiences with her daughter and the array of young people she has worked with. She made it clear there would be some difficulty but it was possible to have the fulfilling family we craved. Our continued contact with DSNSW and our own research kept us informed of the world of down syndrome.
Not long after, we found Dr Casikar who understood our situation and what we wanted. Her explanations and recommendations were non-judgemental and supportive of our decision. More importantly, she provided medical advice neutrally. We understood that we were ‘taking the road less travelled’. My wife and I received balanced views on the health of babies and people with Down Syndrome. Her considerations to our situation in her practice ensured our baby Henry was getting the best support needed for him to succeed. I remember her saying "we are going to deliver your beautiful boy" after our first appointment. Those were words of reassurance which were much needed. They were a stark contrast to the initial ones received.
At 36 weeks, with a mix of excitement and panic of impending fatherhood, Henry entered the world. I remember feeling very proud but at the same time terrified as I didn’t really know how to look after a baby. I had never been a parent before. He was born during the COVID19 lockdown which meant visits to the hospital and home from grandparents weren’t allowed. My wife and I had to become experts overnight. The first time I held him I was very stiff and was scared to drop him. I recall him calmly breathing and sleeping on my chest. My fears were allayed. All my little guy wanted was support, warmth, and love. Something my wife and I had strived and fought to give him since his conception.
With Henry’s diagnosis, we have had some challenges. At 2 months, Henry had open heart surgery to rectify two holes. Being the extraordinary individual that he is, he was back home in half the time we had been told to expect. Since the operation he has become stronger and developed a cheeky personality. Henry constantly defies expectations. He is a little man that does not let his diagnosis define who he is. From sitting, walking, learning to use sign language, to his dedication to practice his waving with every person we pass; he has tackled each milestone in his own way with his signature smile and dance moves.
I am extremely proud of Henry. When I think back, yes, he does not match the initial image of a family my wife and I thought we wanted, but Henry has opened a new world of learning and understanding for us. Henry has made our family extraordinary and more rewarding. He has taught me to be extra brave, to love fiercely, have patience and to embrace everyone’s unique self. He is the boy that brings all the family together smiling. He is the boy that makes those stressful days at work seem insignificant. He is the boy that made me realise dancing could be fun. Henry is my perfect little man.
MARY'S STORY, written by Mum, Liz
Down Syndrome NSW has supported us in many ways after our daughter Mary was diagnosed with Down syndrome.
We were sent a lovely package shortly after Mary was born full of endless information lots of support and many gifts. DSNSW have included us in workshops, family gatherings where we have learnt so much. Not just about how We can help Mary now but also to give us an understanding of what the future might hold. They have connected us with other families who are on a similar journey to us and have provided lots of support and love.
Donating to DSNSW allows them to continue all the support they provide families. It allows them to continue all the hard work they do from workshops, hospital visits, gift packages and much more. We would have been lost without the support DSNSW has given us.
My family originally came from Melbourne so AFL has always been in our blood. After moving to Sydney about 30 years ago we started following the Swans and still to this day are number one fans.
We absolutely love the Swans! Not only do we love watching them play each week but they are so involved with the community.
After watching the team get involved with our children and families throughout the year taking the time to talk with them and teach them some of their footy skills they truly are a genuine club. Their partnership with DSNSW confirms what an amazing club they are. We've been thrilled to attend so many Swans events, all of which have been so authentic and engaging.
THEODORE'S STORY
A letter by Mum, Louise
Dear new parent,
You’ve got this.
I know it seems really overwhelming right now and you are worried about what the future will bring. When my son, Theodore, was diagnosed with Down syndrome, I felt the same way. I knew nothing about Down Syndrome really and had a lot of outdated ideas about what this meant.
I remember feeling really lonely in those early weeks. Turns out, having a child with Down Syndrome has been anything but lonely as I’ve been plugged in to the most wonderful community of people who have either been there before you or are experiencing alongside you the joys and puzzlements of raising a child with an extra chromosome. Anything you are wondering about, there is someone out there to offer advice, ideas, and friendship to help you and your child. You are not alone, even if it feels like it right now. I found Down Syndrome NSW was the best place to start our new journey.
I felt really strongly about meeting other families with babies with Down Syndrome as I wanted my son to grow up with friends with Down Syndrome as well as with typical babies too. Thankfully, through playgroups I was able to make lots of friends for both myself and my son.
The thing that worried me the most in those early months was that my son was also diagnosed with having serious complications with his heart that would require surgery. He went in for his heart operation at 3 months of age and it was the scariest time of my life. I was so grateful to have made those friendships with other parents who offered me so much support during that time, with many parents having gone through similar experiences with their own children. Thankfully, the operation went really well and Theodore has been doing very well since.
Above all, remember this is your baby. They are just a regular baby who needs to be loved and encouraged like anyone else. Some days will be harder than others, but you have a whole network of people who have your back. For me, seeing my son’s cheeky face every morning fills me with so much gratitude that he is my son, I couldn’t imagine wanting him to be any different. He is the best thing that has ever happened to me.
It might be a myth that people with Down Syndrome are ‘always happy’, but what they usually are is authentic. Theodore has allowed me to embrace a more authentic life and in doing so has given me a richer and happier life than I thought possible. I hope your baby will do the same for you - congratulations!
Love from Louise and Theodore.
