kThe brisbane comunity is coming together to raise awareness of a very rare and life threatening immunodeficiency disorder calles HLH. and to help raise funds for a local family to help thier little boy get better . (See thier story below ) the dinner will include a delicious four course meal from the club tavern bistro. Amazing entertainment, lucky door prizes raffles and a fundraising auction. You can help by . attending the dinner $75 per person. Purchase tickets online or in the venue donating money . Or donating items for auction .
Most people can’t even pronounce Hemophagocytic Lymphohistiocytosis (HLH) let alone can say they have heard of this rare life threatening immunodeficiency disorder, which poses a 50% mortality rate in those whom genetically acquire the condition. The only potential cure for HLH is for the patient to undergo chemotherapy to kill off their impaired immune system which is then replaced via a Bone Marrow Transplant.
Unfortunately, Brett Hines and Peta Roselt were forced to learn all about this disorder when their children, Haiden (2 ½ yrs) and Lailah (7 mths), just three months ago, were diagnosed with a form of HLH, so rare that their specific genetically mutated chromosomal chain had been unseen by leading Doctors and specialists thus far. While big brother Haiden had been hospitalized several times with varying illnesses in his short life, it was unknown that he carried a rare mutated chromosome that affected his immune system’s ability to function properly until his baby sister Lailah fell gravely ill with the adenovirus and was subsequently diagnosed with HLH. Sadly, Lailah passed away just two weeks after she was found to carry this mutated gene, whilst undergoing treatment to prepare her for a Bone Marrow Transplant. While parents Brett and Peta have had to grieve the loss of their daughter they have also had to mentally/physically/financially prepare for the upcoming highly dangerous procedures - Chemotherapy and Bone Marrow Transplant - their son Haiden requires, as a potential cure of this immunodeficiency disorder, so that it does not take his life too. By creating the Haiden and Lailah Hines Appeal we aim to raise funds for the family, who still have several rough years ahead of them, following the risky yet potentially lifesaving treatments scheduled for their son and to promote awareness of HLH and other rare life threatening immune suppressing conditions, that most people will be lucky enough to never personally encounter. We hope that you will be able to assist us in doing this by sharing Haiden and Lailah’s story in honor of Lailah’s short time here with us and allow the community to get behind this cause. General Information If you would like to donate to this Appeal please see the following bank account details. Commonwealth Bank BSB: 064 467 ACC#: 1042 1834 Haiden and Lailah Hines Appeal
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