Help Sammi keep shining bright

We met Sammi and her beautiful family in hospital. Sammi was put in a room close to my child who is on her own health journey. Sammi is sunshine even on dark days. She has smiles and kindness for everyone. She makes all our days brighter. The world is a better place with her in it. Here is a small part of Sammi and her family’s story…..

On the 10th February, 2024, Sammi spiked a fever and began showing symptoms of what Alex (Sammi’s mum) thought was a viral respiratory illness. After managing Sammi’s symptoms at home over the weekend and watching Sammi work harder to breathe, Alex took Sammi to the local hospital emergency room for suspected pneumonia. However this was just the beginning of a journey that would see the family spend the next three months in hospital without diagnosis, timelines or certainty for their family.

After first presenting at the Angliss Hospital, Sammi was transferred via ambulance to Monash Children’s Hospital where she spent two weeks fighting a staphylococcal infection in her blood and lung and needing a chest drain to remove the fluid from the space around her lung.

While Sammi’s discharge was being planned, the doctors decided to perform an echocardiogram, where it was discovered that Sammi had a large amount of fluid around her heart. She was then transferred to the Royal Children’s Hospital in Melbourne where she has since undergone 5 surgeries to insert multiple drains to remove the fluid around her heart and lung.

Unfortunately, the fluid keeps recollecting and Sammi currently has two chest drains inserted in her side to ensure that the fluid drains out, as any accumulation around her lung is life threatening as it causes her to be unable 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. To support her and to ensure she stays stable, she has daily albumin replacements, fluids, vitamins and immunoglobulin, along with regular blood transfusions.

Sammi is being looked after by multiple teams at RCH, who are working with international specialists from the Children’s Hospital of Philadelphia (CHOP) to determine why Sammi is continuing to accumulate fluid around her lung and work towards finding a diagnosis. At this stage, doctors believe that Sammi has an extremely rare lymphatic malformation, which has poor prognosis, is very difficult to treat and is likely to be life limiting.

Sammi is now awaiting the results of genetic testing which needs to be undertaken by experts in America to hopefully assist with finding a medication to reduce Sammi’s symptoms and allow her to be well enough to return home, even if only for a short time.

In the meantime, Sammi will be undergoing an MRI of her lymphatic system, which will allow specialist teams to see where her lymphatic leaks are occurring, with the aim of then undertaking a high risk microsurgical lymphatic venous anastomosis to manually ‘re-plumb’ her lymphatic system into her venous system in an attempt to stop lymphatic fluid accumulating in her pleural space.

Whatever the outcome of testing and surgery, Sammi will have a condition which will need to be managed for the rest of her life.

Sammi has been supported throughout her journey by her incredibly loving parents, Alex and Mark, her older sister Kassia (6 years old) and younger brother Remy (22 months). While Alex has stayed bedside with Sammi in hospital, Mark has been at home with Kass and Remy, doing all the domestic duties, helping Kass with her homework from school, doing the school run and packing lunches, all while trying to work and support the family financially.

Despite her future being unknown and a long stay in hospital, Sammi has remained full of love and happiness. She is funny, bright, happy and making friends with the other patients, their families and the doctors and nursing staff. 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.

We are looking for help to support the family during this time and allow them to be together to support Sammi while they navigate the unknown and face a battle that no family should go through.

Your generous contribution will assist Mark and Alex in covering medical bills, daily living expenses, travel costs and other expenses during this difficult time. With your kindness, the family can focus on spending as much time together as possible and supporting Sammi through the next stages of her illness.

We also understand that not everyone can afford to contribute financially, however if you could please consider sharing this campaign to your friends, family and social networks it would be greatly appreciated.