Little Sammi was having up to 3.5 litres of fluid drained from her chest per day.
What began as a fever, quickly turned into something far worse for the four-year-old. In February 2024, mum Alex and dad Mark arrived at the RCH with their daughter who was struggling to breathe from a serious build-up of lymphatic fluid (part of your immune system) around her heart and lung. Little did they know this would be the start of a long and challenging six months.
Sammi underwent nine surgeries to insert multiple life-saving drains into her chest to manage the continuous fluid build-up. This was the first case of such an anomaly occurring at the RCH and doctors were consulting world-experts on possible diagnosis and treatments.
After undertaking scans of her lymphatic system and sending a sample of the fluid to the US for genetic testing, doctors were able to diagnose Sammi with a very complex lymphatic anomaly caused by a mutation of the NRAS gene (which regulates cell growth). It was discovered that such a rare condition requires an equally unique medication which can take time to become effective. Declining rapidly and intubated in intensive care – it was a race against time.
“On a daily basis, Sammi was losing all of her lymphatic fluid out of her drains, along with important proteins, electrolytes, vitamins, minerals and infection fighting cells. When she was at her sickest, Sammi had seven drains inserted into her chest and abdomen and we were worried she wouldn’t make it ,” said Alex.
After five months in hospital, Sammi finally seemed to be turning a corner. The medication appeared to be rebuilding her lymphatic system and scans showed no further fluid build-up, her recovery journey could begin.
On day 174 at the RCH, the family said goodbye to staff and friends and left the hospital, drain free. Sammi is now able to play with her brother and sister again and enjoy all the comforts of home.
“Despite her future being unknown and a long stay in hospital, Sammi has remained full of love and happiness,” said Alex.
“She impresses everyone with her knowledge of what is happening to her body and is inspiring people with her positive attitude. She loves to tell everyone that she is ‘strong in her heart and brave in her head’ and that she can do anything.”
At the RCH, we are constantly inspired by the bravery and strength of these little people. A huge thank you to the family for sharing their story, we wish you all the best.
