PRESCHOOLER, Kobie Staader and his family are at the beginning of a long and tough journey for treatment of Kobie’s X-linked lymphoproliferative (XLP) syndrome.
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Kobie, who is just four years old, is a fraternal (non-identical) twin but his brother Harvie is unaffected by XLP syndrome.
Currently Kobie is reliant on weekly infusions of immunoglobulins but the treatment is no longer effective and more intensive therapy is required to save his life.
“Without treatment we will lose our son,” Kobie’s mother Ms Kaylene Staader told News Of The Area.
“The treatment is not without risk but it is Kobie’s only chance for survival.”
Kobie will undergo chemotherapy followed by a bone marrow transplant at Sydney’s Randwick Children’s Hospital in June.
He will be hospitalised in Sydney for at least three months.
Long term treatment with steroids may also be required after transplantation.
While being treated, Kobie will be isolated from his siblings and extended family to reduce the risk of infection.
His parents are preparing for the lengthy hospital stay and trips to Sydney for treatment but with four other children spending time away from home is especially challenging.
Kobie’s grandmother, Suzanne Coglan will move into the family home to care for Kobie’s siblings while Rod and Kaylene are care Kobie.
XLP syndrome is an extremely rare inherited genetic immunodeficiency disorder characterised by a defective immune system.
It almost exclusively affects males.
Having a compromised immune system means that a simple illness or infection could be life threatening for Kobie.
More than half of individuals with XLP syndrome experience an exaggerated immune response to the Epstein-Barr virus (EBV). EBV is a very common virus that most people will contract without ill effect but for Kobie this virus is deadly.
Mr Rod and Ms Kaylene Staader own Nova Martial Arts at Heatherbrae where Mr Staaer is the principal trainer.
Some of the Studio’s senior students have taken on coaching roles to allow Mr Staader to take time away from the business while Kobie is undergoing treatment.
“Once treatment starts we can only hope and stay positive that it will give us a healthy little boy.” said Kaylene.
The expenses incurred travelling to and from Randwick Hospital, accommodation in Sydney and providing for the family left at home without their usual incomes will place a huge financial strain on the Staader family.
This prompted Kaylene’s sister Nicole Coglan to start a Gofundme page.
Donations can be made at https://www.gofundme.com/kobie039s-fight-for-life…
By Liz MUDD