Grayson’s story

A purple spotty rash when Grayson was just eight months old was the first warning signs of his life-threatening genetic illness, which currently has no cure.

In December 2017, Rachel and Leighton noticed the rash on their baby’s body, and took him immediately for tests.

“Blood tests determined his platelet levels were nearly 0 and he was rushed into hospital,” Rachel recalled.

Following numerous tests failing to identify a cause, Grayson was flown from Mackay Base Hospital to the Queensland Children’s Hospital in Brisbane, where doctors took a sample from Grayson’s bone marrow and discovered he was experiencing bone marrow failure.

“Further genetic testing, throughout March 2018, was carried out to identify that he has TERT gene mutations and short telomeres, finally resulting in a diagnosis, in May, of Dyskeratosis congenita and unfortunately the more severe variant, Hoyeraal-Hreidarsson syndrome.

These conditions mean for the rest of Grayson’s life, there are high chances he may experience liver, lung or other organ failures, as well as a high risk of cancer.

“Over the past six months we have had nearly a dozen hospital stays in Queensland Children’s Hospital and Mackay Base Hospital, treating low blood levels, receiving blood transfusions, reoccurring bleeding issues, tests and procedures to identify the extent of Grayson’s medical issues and tissue typing to find a match for a bone marrow transplant,” Rachel explained.

Grayson is now in the preparation stage for a bone marrow transplant, while doctors monitor a range of other issues as a result of his condition, including serious concerns for his eye sight if not treated as soon as possible.

“The Bone marrow transplant is extremely risky to his life, however, we feel it is the best option for the longevity of his life,” Rachel explained.

“Grayson also has a small cerebellum (back of the brain) which has caused him to have significant developmental delays.  He has extensive physiotherapy, speech therapy and occupational therapy to help him gain motor skills and language development.”

The young family has packed up their house to stay in Brisbane during the next six to 12 months to prepare for Grayson’s bone marrow transplant.

“The bone marrow transplant will help to solve his blood and bone marrow issues, however there is no cure for his overall diagnosis and there is so much uncertainty for his future.”

“Grayson’s diagnosis was a long process, needing the genetic research to be done in order to completely understand what was causing his bone marrow failure and any implications for his future. It was devastating to find out he has a life-threatening illness that has been passed down genetically and may affect Grayson and any future children for our family.

“Grayson is at such a young age, so he is oblivious to the impacts this disorder is having on his life and causing his delays. He is still a happy, charming, TINY, one-year-old who brings joy to all those around him.”

Grayson is one of 19 ambassadors for the Woolworths Regional Wall Tokens campaign.

By purchasing a $2 wall token from now until the end of September, you are helping fund equipment and programs in your local hospital, which help families like Grayson’s through an emotional, stressful, and at times uncertain journey.

Woolworths Regional Wall Tokens is an opportunity to highlight some of the brave kids throughout Queensland and northern New South Wales, who you can help by purchasing a wall token.

Other ways you can help

Everything we do for sick and injured kids is made possible by the generosity and support of our donors, partners and the community.