Bonnie
Our Little Superhero
Ralph
Our Giggly Superhero
Meet Bonnie: Our little superhero
Hi, I’m Jacquie, Bonnie’s mum. Bonnie is our “good time girl.” She lights up a room whenever she’s happy, loves music - especially Row, Row, Row Your Boat, Twinkle, Twinkle Little Star, and The Wheels on the Bus - and has the cutest little laugh that comes straight from the heart.
When Bonnie loves you … she really loves you! She’ll grab your face, ears, or hair and pull you in close for a big kiss on the cheek. I know she’s telling me ‘I love you’ when she squeezes me tight.
Bonnie’s superhero powers aren’t about flying or super strength - they’re about keeping us present. She is a superhero because she keeps me present. She reminds me every day what truly matters: joy and connection.
Her favourite things - swinging, doing crafts, lying on the grass under a tree watching the light sparkle through the leaves - remind me to slow down and appreciate the little, magical moments.
Bonnie’s journey hasn’t been easy. What started as a typical pregnancy and birth quickly turned into a journey filled with uncertainty. Bonnie missed developmental milestones and struggled with basic motor skills. At just 5.5 months, she was initially diagnosed with quadriplegic cerebral palsy.
At six months, she had seizures that led to an induced coma and a five-week stay at the Sydney Children’s Hospital, Randwick. It was there that the genetic team discovered her rare condition, EEF1A2. Fewer than 100 people in the world have it, and fewer than seven share Bonnie’s exact mutation.
Life for us is complex - coordinating therapies, specialist appointments and care, all while navigating the emotional and financial strain. Bonnie feels frustrated when she can’t communicate or do something she wants. Yet through it all, she teaches us patience, resilience and the beauty of small moments.
People used to tell me, “Just let Bonnie be Bonnie, she’ll show you what she can do when she’s ready.” Over the past few years, I’ve learnt to let go a little and I am incredibly proud of who she is becoming.
Bear Cottage has been a lifeline for us. It is a magical place where families are allowed to let go and just be … the load is lifted, and I can prioritise self-care. It has become like an extension of our family, offering vital support, joy, and connection. Bonnie’s older sister, Kirby, has even developed a passion for supporting Bear Cottage herself, hosting craft events and fundraisers.
Superhero Week is special because it’s about community, connection and giving families the gift of time and joy. By supporting Bear Cottage, you are quite literally improving the quality of life for so many. You’re creating joy, happiness and peace where sometimes it’s hard to find. You’re giving smiles, laughter, and time. What could possibly be better than that?
If I could have one superhero power, it would be to make time stand still - because, as every parent knows, children grow up too fast.
From the bottom of my heart, thank you. Thank you for being there for Bonnie, for every little and big thing you do to support her. You make Bear Cottage a place of comfort and belonging, and we will always be grateful.
Ralph's superhero power is giggle power.
Ralph’s journey has been far from straightforward. After a rocky start, which involved an almost six-month stay in hospital, Ralph’s life has been a continuous merry-go-round of illness and hospital stays, surgeries, weekly therapies, and a never-ending list of appointments with new specialists being added to the mix annually.
This is all due to Ralph’s very rare medical diagnosis, which involves a mutation in the KAT6B gene. When people ask about Ralph, we tell them he has KAT6B, which is easier than the long-winded version known as Say-Barber-Biesecker-Young-Simpson syndrome. In its simplest form, Ralph’s condition affects every part of his body, and the result is that his body just doesn’t work as it should with a range of neurodevelopmental and physical abnormalities.
There is no cure for Ralph’s condition, which means he will continue to face lifelong health challenges — including global developmental delay, tube feeding, low vision, being non-verbal, and will most likely requiring a wheelchair.
It’s a difficult diagnosis to navigate because so little is known about it, with only around 150 cases reported worldwide. More often than not, we’re left without answers as to why certain things happen with Ralph, hearing instead phrases like, “we’ll just have to wait and see.” So, we take each day as it comes because looking too far ahead often means imagining worst-case scenarios that may never happen.
Second only to his giggle power, Ralph’s true superpower might be his ability to reshape reality. He’s transformed not just our lives, but the way we see the world. Along the way, he’s pushed us to rethink what really matters, deepened our understanding of compassion, and shown us what it means to truly care for someone. He’s also taught us how to ask for help, accept it with grace, and pass it on to others.
What’s been most remarkable is discovering just how many people are willing to step in and support you - if you let them. We’ve been continually humbled by the kindness and generosity of others, often from complete strangers. Ralph has an extraordinary way of bringing people together.
Bear Cottage has been one of our greatest blessings. In addition to providing us with respite, it has become like a second home for our family. A place we can all enjoy quality time together in the most beautiful setting. Not only do we get a break from Ralph’s intense medical schedule, but we also get to engage with other families who face similar daily challenges. It’s a place where you don’t feel so alone being a family with such challenges.
Seeing that we have a stay listed on the calendar brings joy, not only because it means rest for us but also because it is a place Ralph is comfortable. It’s somewhere we know Ralph will receive exceptional care, plenty of cuddles and much love and attention. Our whole family comes away from Bear Cottage feeling refreshed. It truly is a special place and so very much needed for families such as ours.
Superhero Week matters deeply because it shines a light on the reality of life for families with medically complex children and the day-to-day challenges that we face. It is not always easy for others to fully understand this world, which is why awareness is so important; it opens the door to empathy, compassion and meaningful support.
No one would ever wish to need Bear Cottage, but the reality is, many families do. Bear Cottage needs support so it can continue to care for some of the most vulnerable people in society and their families.
If I could choose a superpower for myself, it would be to have the ability to remove Ralph’s challenges so he could experience all the wonders of this world just as his siblings do.
Regardless of the card we’ve been dealt, Ralph truly has enriched our lives through the friendships we’ve made to understanding the fragility of life, experiencing the amazing support of family, friends, strangers and the incredible team at Bear Cottage.
Not all superheroes wear capes. Some teach us. Some support us. Some hold our hands through the toughest of moments and wipe our tears when we don’t think we can go on.
If there is one thing I know, it’s that Bear Cottage is full of superheroes. From the children to the families, to the staff and all those who support it.
Bear Cottage is a super place.
