Xavier’s Fight For Life

On the 15/12/2012, Katelyn, James and family where blessed with a beautiful baby boy XAVIER JAMES JUSTIN FIELD. They knew there was a possibility that Xavier could potentially have (XLP) X-Linked lymphoproliferative syndrome. When Xavier was 6months old they got the devastating news that Xavier did in fact have XLP. When Xavier was a year old he became very unwell and his immune system deteriorated rapidly causing Hypogammaglobulinemia (Immunoglobulin Deficiency), Leading him to become reliant on Immunoglobulin Transfusions (IVIG) weekly. Xavier’s specialist and doctors have advised his parents and family that the only possible chance Xavier has for a cure is a Bone Marrow Transplant. Xavier his Mum, Dad, Nan and his little brother Zander met with his Transplant Specialist Dr Richard Mitchell On Tuesday 2nd July 2019 at Sydney Children’s Hospital Randwick to talk about the ins and outs of a transplant. Xavier’s parents have now made one of the most difficult and life changing decisions of there lives, to proceeded with Xavier going through with the Bone Marrow Transplant that could potentially save there little boys life. Katelyn and James have one other child 2 year old little Zander. Zander will stay behind with James and Nan Fiona while Katelyn and Xavier face the epic challenge of having the bone marrow transplant at Randwick Children’s Hospital in Sydney 180km from home making it a 2 1/2 hour trip each way. While Katelyn provides full time care for Xavier in Hospital she will be unable to work for 13months or more. James will be working a full time job to try keep an income flow while juggling Zander back home and travelling to Sydney on weekdays when needed and weekends. The family is going to find it hard Financially, Mentally and Emotionally. They will endure financial hardship with living in between the hospital and other temporary accommodation the expense of traveling to and from the hospital and other expenses that will occur during this difficult time.   We are a proud family and never ask for anything and are always willing to help others. But with this very difficult journey we are about to face we will need a helping hand in every way possible, especially financially witch is the biggest burden of all.  Xavier’s fight will start with surgery to have a central line inserted into his chest witch will be done in JHH, Xavier will then travel to Sydney to the children's hospital Randwick to start a round of chemotherapy for a week  followed by the transplant where we then fight with him and hope and pray that it all works and we have a good out come. But during this time we will shower him in endless love, support and positivity. XAVIER’S WISH LIST-   - To go to Disney Land America. - Meet the sharer’s from YouTube. - Meet Roman Atwood from YouTube. - Meet Marshmallow. - Meet Billy Ray Cyrus. - See Motorbike stunt riding. Xavier’s family would like to raise enough money to grant Xavier one or more  of his WISHES.   WHAT IS XLP- X-Linked lymphoproliferative Syndrome (XLP), is a genetic defect which causes the immune system to respond abnormally to some viral infections. This can result either in an under active immune system (immunodeficiency) or an overactive immune system, which can cause as many problems.   HOW COMMON IS (XLP)  (XLP) is extremely rare, and only about 150 families with (XLP) are known to exist worldwide.  WHAT ARE THE FEATURES OF THE CONDITION-  (XLP) can have many different symptoms. -If a patient comes into contact with glandular fever (EBV- Epstein Barr Virus) this can be fatal.  - Cancer - immunodeficiency  It is common for one individual to have several different symptoms over the course of their illness. CURE- Bone Marrow Transplant is the definitive treatment of choice at the present time for (XLP) This is a very difficult procedure, requiring a prolonged hospital stay of up to 3/4 months it will take Xavier 12 months to fully recover from start to finish. with out a bone marrow transplant people deteriorate over time to where there condition becomes fatal. the condition will never get better with out the cure of a bone marrow transplant. it is said that no one has ever lived over the early stages of 30 who has not had a bone marrow transplant. The worst out come from this all is that it all could go wrong and Xavier could lose his battle.