GENES for Jeans Day was celebrated in honour of a very special little boy this week at Central Health Alliance in Williamtown.
When Kaylene Staader was pregnant with her twin boys, she found out that she was a carrier for a genetic disorder X-linked lymphoproliferative syndrome (XLP).
She was told there was a 50 percent chance, she would pass it onto one or both of her boys.
The twins were tested at birth for the disorder, and when they were about a week old, it was discovered that one of the twins, Kobie, had XLP.
A little after Kobie turned one, Kaylene and her husband discovered that the disorder had developed, and as a result he had little to no immune system.
Once a week, the family go into Central Health Alliance in Williamtown, and Kobie gets his immunoglobulin transfusion through a little port in his stomach.
At the age of two, Kobie handles this all in his stride, and is mostly just excited to see his ‘favourite Paul’, Dr Paul Burford, and of course get his handful of lollies.
Fortunately, there is a cure for Kobie’s disease and at some point in the coming years, he will undergo chemotherapy and a bone marrow transplant.
Kaylene told News Of The Area, “I am so overwhelmed by the love and support myself, Kobie and our family have received from Dr Burford at Central Health Alliance.”
“Not only is Paul our doctor, we consider him family.”
“I have learnt so much from Kobie already, he has shown me strengths I never knew I even had,” she said.
The Staader family have a long journey ahead of them, but they are confident that Kobie has shown how strong and courageous he is, and that with the continued support of their family and friends, they will be able to look back and see the fight they won with pride.
“We’d like to take this opportunity to highlight the need to support causes like Genes for Jeans Day,” Kaylene said.
“We just never know the value of what research does until you need it for your own children.”
By Rachael VAUGHAN