Kobie's Fight For Life

In 2015 our world was enriched with the birth of our newest family members Kobie and Harvie (twins born on 26th May). Our joy quickly turned into heartache when less than a week old we learnt that one of our twin babies was born with XLP. What is XLP?  Well it's an extremely rare genetic disorder carried by the mother with a 50/50 chance of passing on to their child. X-Linked lymphoproliferative disease (XLP) is a disorder of the immune system and blood-forming cells that is found almost exclusively in males. More than half of individuals with this disorder experience an exaggerated immune response to the Epstein-Barr virus (EBV). EBV is a very common virus that most of us contract at sometime in our life and we don't even know we have it or have had it, but for Kobie this common virus is deadly.                                                            Kobie's immune system deteriorated rapidly in the first few months of his life causing Hypogammaglobulinemia (immunoglobulin deficiency), leading him to become reliant on immunoglobulin transfusion (IVIG) weekly. Three years on his weekly transfusions are no longer providing the boost to his immune system that is needed to protect him. With his immune system weakening, XLP can become more aggressive at any time. Kobie's specialists have advised that the only possible chance Kobie has for a cure is a Bone Marrow Transplant. His parents met with his transplant specialist on Tuesday 2nd April 2019 and have now made one of the most difficult decisions of their life, to proceed with the bone marrow transplant that could save their little boys life. Rod and Kaylene have 5 children 4 of which need to stay behind while they face this epic challenge with Kobie. Kobie will receive his transplant at the Randwick Childrens Hospital in Sydney 170 kilometres from home making it a 3 hour trip each way. While Rod and Kaylene provide full time care for Kobie they will need to arrange care for Kobie's siblings and endure the expense of living between the hospital and other temporary accomodation expenses that they currently do not have and without their current incomes as they will not be able to work for some time. They are a proud family, so we are asking for help on their behalf to help ease the financial burden that this beautiful family will face. Kobie’s fight will start with surgery to have a central line inserted in his chest, then a round of Chemotherapy followed by the transplant and then,  we wait, we pray, we hold on to hope and most importantly we give him love and positivity.