Antoni’s Story
After his first immunisations at 6 weeks of age Antoni became severely unwell experiencing a seizure, and this ultimately lead to his SCID diagnosis. This is Antoni's story...
"Antoni’s immunisations triggered an immune response that requited further testing, particularly for epilepsy. During these tests, a diagnosis of SCID was provided. Being a relatively rare disease, this was overwhelming and lead to so many more tests. The family was advised that their son would need to stay in hospital and isolate to survive."

On the 20th of October 2021, Ladawan gave birth to her son, Antoni at St. George Hospital. Although Antoni arrived into the world a little earlier than expected, all went well.

A few days after his arrival, a Newborn Bloodspot Screening test was done, and he was sent home. Ladawan then received a call advising of some abnormalities in the first test and to come back to hospital to complete the test again – so she did. Following this second test, she was advised that the test was inconclusive, and if there was anything major she would be contacted (and she was not).

They continued life at home for the first few weeks, enjoying all the little moments with loved ones. Antoni then attended his first immunisation appointment at 6 weeks of age, receiving the first of his vaccination schedule. Two days later at home, Antoni became severely unwell experiencing a seizure. This was confronting and incredibly scary for the family as they rushed their little boy to the hospital – where he was for almost a year.

Antoni’s immunisations triggered an immune response that requited further testing, particularly for epilepsy. During these tests, a diagnosis of SCID was provided. Being a relatively rare disease, this was overwhelming and lead to so many more tests. The family was advised that their son would need to stay in hospital and isolate to survive.

As Ladawan and her husband Miroslaw already had two children at home it was decided that Ladawan would stay with Antoni during his early hospital admission. This was a very challenging time for the entire family. Due to the need to isolate, she was the only family member that was able to be with him, creating a very lonely and mentally difficult time for her. With regular conversations with the medical team, there was no definite answers on what was going to happen next, and progress of her little boy.

In March 2022, Antoni, Ladawan and a nurse travelled from Australia to London in the UK to receive a Thymus Transplant. Antoni was provided with oxygen during the flight and closely monitored. Seeing as this treatment is not available in Australia, the Government provided them with the opportunity to travel and receive this transplant, which the family is so thankful for. After spending one and a half months in the UK and receiving the transplant, the family returned home to Australia and back to the hospital for monitoring.

After two weeks at home, Antoni was admitted to hospital again, after contracting COVID-19 and was very unwell. He then stayed in hospital until November 2022. During this time, there were many tests and procedures primarily due to him needing a central line, which often became infected. It wasn’t until Antoni turned one in October that he was allowed a few more visits from his close family members.

Once he was finally well enough to go home, he did have to go back to the hospital weekly for blood tests and check-ups. At this time, the family remained vigilant to keep away from people who were unwell, whilst also trying to continue living their life, experiencing things such as the park with Antoni.

It was and still is quite an uncertain time for the family, as Antoni is only the 56th child to receive this specific transplant in the world, there is lots of unfamiliar territory as every person’s body reacts differently to things. The healthcare team in Australia are very connected to the team in London, where they work together to ensure Antoni has the best possible chance of a healthy life.

Antoni will be Turing 2 in October and the family regularly expose him to the community, as his immunity has increased and to further strengthen this. He is doing really well for his age and the family are excited about the future with him leading a healthy life.

With a family background of Thai and Polish, Ladawan has just recently embarked on a trip back to Thailand to spend five weeks with her family. This kind of travel required careful and considered planning with medication, information.

Published: October 2023