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To Whom It May Concern:
We write to share with you a story that has touched the hearts of the local communities in Caboolture/Morayfield and ultimately led to the creation of the Haiden and Lailah Hines Appeal.
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 which you know as a common cold and was subsequently diagnosed with HLH.
Like all teething babies, Lailah had a cold which bought on seizures and after attending the Caboolture hospital and then transferred to Brisbane’s Children’s hospital; Lailah was put into intensive care. Sadly, Lailah passed away just eleven days after she was found to carry this mutated gene, whilst undergoing treatment to prepare her for a Bone Marrow Transplant.
During Lailah’s hospitalization Haiden was also tested for HLH, his results show he too has the condition. HLH is so rare there are only seven people with this condition in Australia, and there are only seven types of HLH until Haiden and Lailah were diagnosed; now there are eight. With the main research and support hospital in the USA.
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.
Like all parents, Brett and Peta work hard to provide for their family, but now with Haiden about to begin his treatment which involves attending the Brisbane Children’s hospital their family are having to relocate to Brisbane for the duration of Haiden’s treatment and isolation as this progress may need to be done several times until Haiden’s immunity takes.
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.
Alisa Mapperson (Permit Holder)