Family Stories
Hear first hand stories from our families of their experiences.
Narkiah
On the 16th of November 2013 Miss Narkiah made her very dramatic debut into the world.
As a young Mum having a baby for the first time was scary enough but as the days progressed following Narkiah’s birth every mother’s worst fear was becoming my new reality, my beautiful little girl was anything but okay. On day 5 Narkiah was diagnosed with congenital cytomegalovirus (CMV) and flown from Warrnambool to Melbourne for treatment and investigation to see just how much damage had been caused.
After 46 long days in hospital receiving treatment and being diagnosed with CP, Epilepsy and Global Development Delay, Narkiah was finally discharged, and we were able to take her home. We knew it was still a long road ahead and it was going to be tough with follow up appointments, referrals, treatments, and blood tests on top of all the ordinary things we needed to do to look after our baby. We were made to feel that the future was grim as doctors weren’t promising anything positive.
It wasn’t until starting with Kids+ Foundation in February 2014 that things started to improve. Over time and with the help of her therapists Narkiah was showing signs of wanting to do things so we were able to create goals and work towards achieving these huge wins. Being so new to everything that came with this new chapter of our lives it was Narkiah’s amazing therapy team that helped me find my way as a new Mum.
Over the years when Narkiah’s health was deteriorating, and things weren’t going so well, having the support from the Kids+ team really made a difference. The support our whole family receives is such a blessing, all the therapists go above and beyond their role, not only for Narkiah but for our entire family.
Without Kids+ we wouldn’t be where we are today. There aren’t enough words to express my appreciation of Kids+ and the support they provide us.
- Chloe Meadows
Max
After a “text-book” fraternal triplet pregnancy, our world was tipped upside down. Just after 31 weeks, we found out that baby #3 had suffered a “severe” ventricular brain haemorrhage. There was nothing they could do, except I had to try and hold on, for the sake of the other two babies. The babies were delivered at 32 + 4 weeks. We met our two baby girls, Mali and Grace. But number 3 remained a mystery. Doctors informed us that the baby had suffered a level 4 haemorrhage and would have cerebral palsy.
One week later, after numerous meetings with specialists and our amazing social-worker, we decided to meet baby # 3, our baby boy, Max. Later, Max was rushed to the RCH. His brain haemorrhage had resulted in hydrocephalus and his head was swelling at a rapid rate. Following an MRI, news deteriorated rapidly. The hydrocephalus had damaged the rest of Max’s “good” brain and we were introduced to the palliative care team. They told us that Max would not walk or talk, would not feed himself, would not even know who we were. It was likely he would pass away before he turned 1. Max had 5 brain surgeries in 5 months, to insert, then revise a shunt, that kept failing.
When we brought Max home, Kelly Reynolds arrived at our front door. I was naive and had no comprehension of what all this meant. I knew it was not what I had planned our life to be. We had a 2-year-old and two newborns; how could we manage another newborn, who would grow up to have severe special needs? Kelly went above and beyond, to help set us up for the NDIS. Her expertise and kind nature helped us through these early stages, when it all seemed like a blur.
3 years on, Max has hemiplegic cerebral palsy, but he is running, jumping, talking (a lot!), feeds himself, has started going to the toilet on his own and, basically, keeps up with his sisters! Max, Mali, Grace and Siena all LOVE Sara and Helen! I am forever grateful that the team at Kids+ have always included Max’s sisters in his therapy sessions. Kids+ have honestly changed our lives and we are so privileged to be involved with an amazing foundation in our Geelong community
- Kids+ Family
Juliette (JuJu)
When our beautiful girl we call Juju was around 6 months old, she began to develop some repetitive, uncontrolled head nodding movements, along with other symptoms, that made us worried about her health and development.
She was soon diagnosed with West Syndrome, a condition characterised by frequent seizures and very often, intellectual disability and autism. It was quickly apparent that Juliette was not meeting her developmental milestones and our Paediatrician referred us to Kids+. Sarah Foley visited our home soon afterwards and we knew that Juliette was quite literally in the best of hands. As a family, we felt so grateful that Geelong had a foundation that offered babies with neurodevelopmental disorders early intervention support with little to no wait time. Between caring for an unwell child with a harsh medication regime and many appointments, therapy was something we looked forward to each week, a chance for achievements to be celebrated and new ideas to be explored.
When I think about the support Kids+ has provided Juliette and our family over the years, it is rather incredible. Everything from physiotherapy and speech therapy to specialised training for us as parents, not to mention equipment trials and helping us navigate many challenges along the way. Juju, now 8 years old is currently focussing on learning how to use an AAC (Augmentative and Alternative Communication) device with the support of her passionate Speech Pathologist Jenna O’Brien. Jenna has played a huge role in educating and engaging our family and Juju’s broader support network in AAC. It is pretty special when Juliette can indicate at times what she wants or how she’s feeling. Behind her cheeky smile we know she has a lot to say. We are so thankful for the continued support of the Kids+ team!
- Juliette Kotarac
The Reddington Family
Kids+ have been a key part of our family’s life since our first child was just 10 weeks old.
As first-time parents, having a premmie was a daunting experience. Kids+ gave us the support and confidence we needed to understand and advocate for our child’s needs. When our second child was born even earlier, Kids+ were again there with a clear pathway to manage his conditions and improve daily living, as well as listening and providing emotional support to us as parents. They always put genuine time and care into supporting what our kids need for their development and provide exceptional opportunities for kids to thrive (the Surf Ed Program has been a particular highlight!)
- The Reddington Family
Hamish
Throughout Hamish’s journey with cerebral palsy, we have been incredibly fortunate to have Kids+ there every step of the way. From Hamish’s first home visit at 5 weeks of age, his therapy team have been a pillar of support for all of us.
Kids+ have removed the uncertainty by informing and educating us while providing empathy and support. We feel empowered and equipped with the knowledge and skills required to implement strategies and complete meaningful tasks and exercises at home that have a real impact. The team have thought of everything before we have and they are always thinking of the next milestone, how we are going to get there and what supports are required.
Visiting Kids+ for therapy is often the highlight of Hamish’s day. The bond he shares with his therapy team is so strong and this is a true testament to the kind, compassionate, fun, understanding people they are. We are continually amazed by how Kids+ can make challenging work fun and engaging for him.
There have been countless occasions where we have messaged Hamish’s therapy team to share moments of achievement with them. Whenever Hamish makes incremental progress, it is acknowledged and celebrated, and we absolutely love this. For a kid who has to work so hard at everything he does, this means the world to him and us and we’re so thankful to have such an amazing crew to share and celebrate all of his wins.
Hamish was so excited to take his little brother to the Kids+ Family Christmas Party at the end of 2021. He was talking about this for days before and after the event, we know he is so proud to be a part of the Kids+ community.
Although the journey for us has been incredibly emotional and tough, there is absolutely no doubt in our minds that Hamish is where he is today thanks to the incredibly knowledgeable team at Kids+ and the early access to intervention he has received. We are so grateful for all that they do and the opportunities they have provided to enrich Hamish’s life.
- The Skewes Family