‘Brave in her heart’: Sammi’s fight against rare mystery illness

Four-year-old Sammi is staying “strong in her heart and brave in her head” as doctors across the globe try to identify treatment for her rare, undiagnosed condition.

Sammi, 4, is battling a rare unknown illness at the Royal Children’s Hospital. Picture: GoFundMe

A little girl facing an uncertain future is fighting her rare illness by staying “strong in her heart and brave in her head”.

Four-year-old Sammi has spent more than three months in hospital battling an extremely rare lymphatic malformation, which is very difficult to treat and likely to be life-limiting.

Multiple teams at the Royal Children’s Hospital have been unable to diagnose her condition and are now working with medical specialists in the US to find answers, as supporters raise funds for her family’s journey ahead.

Sammi spiked a fever on February 10 and was taken to the Angliss Hospital for suspected pneumonia.

This was just the beginning of a journey that would see her family spend the next 12 weeks in hospital without a diagnosis, timelines or certainty.

Sammi was taken by ambulance to Monash Children’s Hospital where she spent two weeks fighting a blood and lung infection requiring a chest drain to remove fluid.

As doctors were planning to discharge Sammi, an ultrasound discovered a large amount of fluid around her heart.

She was transferred to the Royal Children’s Hospital where she has now undergone five surgeries to drain fluid from her heart and lung.

Doctors have been unable to stop the fluid leaks, which threatens Sammi’s ability to breathe.

“On a daily basis, Sammi is losing all of her lymphatic fluid out of her drains, along with important proteins, electrolytes, vitamins, minerals and infection fighting cells,” her fundraiser page reads.

Sammi is currently awaiting the results of genetic tests in the US to hopefully identify medication to reduce her symptoms and allow her to return home, even if only for a short time.

Specialist medical teams are also working toward a “high risk” surgery to manually “replumb” her lymphatic system into her venous system to try stop her lymphatic fluid leaks.

Despite her future being unknown, Sammi has remained full of love in hospital, telling everyone that she is “strong in her heart and brave in her head” and can do anything.

“She impresses everyone with her knowledge of what is happening to her body and is inspiring people with her positive attitude,” the fundraiser said.

Sammi’s mother Alex has remained at her hospital bedside since February, while her father Mark has stayed home to care for Sammi’s siblings, six-year-old Kassia and 22-month-old Remy, and financially support the family.

The fundraiser, launched by a friend of the family, will assist in covering medical bills, daily living expenses, travel costs and other expenses, enabling the family to spend “as much time together as possible” as Sammi enters the next stage of her illness.