Some stories leave a lasting mark on your heart and in your mind –and Sammi’s story that we shared with you last Christmas was definitely one of them.
Just last year, Sammi’s chest filled with fluid, and her doctors struggled to understand why. After months of searching for answers, the expert clinicians at The Royal Children’s Hospital (RCH) finally uncovered that she had a rare genetic mutation.
A new, experimental drug offered hope, but this treatment would take months to work – if at all – and sadly, Sammi was going downhill, fast. Her lungs began to fail, and her care team made the heart-wrenching decision to remove her chest drains and to prepare her family for the worst.
But then the unexpected happened. As clinicians removed the very last drain, the drug began to work – and eventually, after 188 days at the RCH, Sammi returned home.
Today, the bubbly five-year-old is thriving, and aside from the occasional visit to the RCH, she is back enjoying school, spending time with her siblings and living life to the fullest.
We recently had the chance to reconnect with Sammi and her mother, Alex, and we’re honoured to share the next chapter of their journey.
How is Sammi doing now?
She’s such a typical middle child. She’s the cheeky one, the one who pushes boundaries, the one that’s loud and headstrong. She’s also just full of joy, sunshine and happiness, and people who don’t even know us or the story tell me that she’s the most smiley kid ever. I just say that she’s happy to be alive – and that’s not even a joke.
How is Sammi doing at school?
We were really nervous about how she was going to be at school this year, after everything she went through. But she has just taken to school like a duck to water. She walks around everywhere with this humongous smile on her face. Her teachers also tell me that she’s an absolute delight to have in the classroom.
What does every day look like now?
She comes downstairs every morning with a huge smile on her face. She has to take her medication first thing in the morning, and I then drop her off at school. We’ve only been home for 10 months, but we look around at our three children playing and we almost feel like Sammi’s time in hospital was an alternate universe because of how normal everything feels now.
This type of normal felt completely out of reach last year, but we’ve been gifted this life again and we don’t take it for granted.
Sammi enjoying fun-filled days and adventures with her siblings
What was something you did recently that once seemed unimaginable?
To be honest, all of it seemed impossible this time last year. Seeing her without drains and lines and seeing her wear clothes – all of it. Even seeing her eat a meal at home with us was so far out of reach last year when it was all happening. But apart from all the big milestones, like starting school, eating dinner as a family, having Christmas together and her birthday, I think the biggest thing we’ve achieved has been going away for some mini breaks. Something that Sammi talked about a lot when she was in hospital was wanting to swim at the beach.
So, even though her birthday was in November and it wasn’t super warm, she swam on her fifth birthday. Then over summer, we went down to the beach, just for the day and she snorkeled. This kid was on a ventilator in July last year but is now swimming and snorkeling in January – not even six months later.
What are your hopes for Sammi moving forward?
I want Sammi to have a long, beautiful, happy, healthy life. I just want her to make the memories count because we all fall into this trap that your future is guaranteed and everybody gets tomorrow, but we know that’s not true because of what we’ve been through.
So, I want to make all the memories for all of us together. I want her to love life and to know that she’s bigger than her illness and her hospital experience, and that she’s not the diagnosis.