Tyson's Story

Tyson’s Story

As a baby, Tyson’s ongoing infections were beginning to worry his family. After several hospital admissions they insisted on further testing which resulted in the diagnosis of X-linked Chronic Granulomatous Disease, a rare genetic disease. Here is his story…

“Tyson’s parents were informed that he was in the top 10% of those severely affected by this condition and a bone marrow transplant was highly recommended .. Within weeks, it was confirmed that they only had the option of a poorly matched blood cord for transplant and although it was an option it was a very risky one with statistics that were not good. Tyson’s parents were told that genetic selection IVF to have a healthy second child who could be a possible match was also an option, but that they may not have the time to achieve so.”

Tyson was born in April 2013 in Sydney and was reasonably well for the first 6 months of his life. It was around October 2013 when he began to have a series of unexplained infections and fevers that would go away with IV antibiotics and return soon after they were stopped. On the third or so occasion that Tyson ended up in hospital his parents insisted that they do further testing to find out what was happening and a few weeks later in January 2014 Tyson was diagnosed with the rare genetic disease which is X-linked Chronic Granulomatous Disease.

Further testing continued to map where the genetic fault occurred and how severe his neutrophil function actually was. It was some 6 weeks later that Tyson’s parents were informed that he was in the top 10% of those severely affected by this condition and a bone marrow transplant was highly recommended. Due to the mixed ethnicity of Tyson with his mum being Thai and dad being Australian they were told that the tissue typing process and the chances of a solid matching donor were unlikely. Within weeks, it was confirmed that they only had the option of a poorly matched blood cord for transplant and although it was an option it was a very risky one with statistics that were not good. Tyson’s parents were told that genetic selection IVF to have a healthy second child who could be a possible match was also an option, but that they may not have the time to achieve so.

Tyson’s parents immediately started building their case and got in contact with genetic counsellors who sent them to the director of Genea who specialised in these kinds of things. After much testing and preparation, they started the process and were unlikely in the first round, although in the second round they actually got two embryos that were unaffected by CGD and both boys and suitable. Immediately they began the process of putting the embryo back and much to their luck and amazement the embryo took and resulted in Tyson’s little brother, Alexander, who was a 10/10 match sibling donor and happy healthy little boy.

Alexander was born August 2016 and had now put some very positive options on the table, but Tyson’s parents now had to weigh up when it was the right time to go for a transplant. They had to ensure Alexander was not put in any danger and that they could yield enough stem cells in order to be successful and balance how long they could wait given that Tyson’s infections were getting more frequent and more serious even though he was on all the prophylaxis possible for his condition. Tyson’s parents ended up waiting until October 2017 until Alexander was put under and Tyson was to receive a fresh transfer of his cells as well as his brother’s blood cord that had been preserved and stored from in case they did not have time to wait for Alex to grow.

Tyson was in isolation a few months with the chemotherapy conditioning to suppress his old immune system, and also after the transplant until they were satisfied that his new immune system was strong enough to re-enter the world.

Tyson surprised everyone with minimal complications, he walked out those doors for the first time with his new immune system on board some +35 days post BMT. The first 100 days are the riskiest with the chance of acute complications of BMT and still with a long 6 months or so ahead of him with a very immature immune system and also the risks of transplant complications still lingering. It was a long bumpy road with good days and bad days and a lot of medication to get him out of the woods, but Tyson and his family got there, one foot in front of the other and one day at a time.

Tyson’s parents will never forget the road they walked or the help from Westmead Children’s Hospital, both the immunology and oncology teams and Genea for playing their part. It was heartbreaking to have their first child diagnosed with something so life threatening so early and they appreciate that in Australia they were able to get the right help and attack it head on. They are grateful for every day and what modern medicine is capable of.

Published: December 2019.

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