<div>Since Christmas, Chris, Daisy, Zephyr, Kai, and now baby Lulu have been living a reality no family should ever have to face.
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<div>At just 24 weeks pregnant, Daisy was admitted to hospital due to serious pregnancy complications. From Christmas until Lulu was born in April at 36 weeks, the entire family relocated to Ronald McDonald House so they could stay together. Zephyr had to attend school away from home while Chris balanced caring for Daisy, who was confined to a wheelchair for much of that time, as well as looking after Zephyr and Kai. It was an incredibly difficult few months, but they faced every challenge together as a family.
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<div>Soon after birth, their precious daughter, Lulu, was diagnosed with Beckwith-Wiedemann Syndrome (BWS), a rare genetic condition that causes parts of the body to grow larger than usual and can affect multiple organs. Lulu has a particularly severe form of the condition. One of her biggest challenges is a significantly enlarged tongue (macroglossia), which affects her ability to feed, breathe, and remain comfortable. Because of the severity, doctors are hoping to perform tongue reduction surgery much sooner than originally expected.
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<div>Just as they hoped life might finally begin to settle, the family found themselves back in Brisbane for more testing after doctors discovered multiple large haemangiomas (non-cancerous tumours) on Lulu's liver.
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<div>During this hospital stay, Lulu underwent multiple MRIs and ultrasounds to determine the extent of the haemangiomas. The tests were incredibly distressing for such a tiny baby, but they provided much needed answers. The haemangiomas are large and numerous, and doctors will continue to monitor them closely as they can cause the liver to enlarge (hepatomegaly), leading to rapid breathing, feeding difficulties, poor weight gain, and jaundice. Although the haemangiomas are non cancerous, children with Beckwith-Wiedemann Syndrome require ongoing monitoring, so every scan and appointment comes with the hope and prayer that the lumps remain benign.
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<div>Lulu will now need to travel to Brisbane every three months for ultrasounds and blood tests to closely monitor the haemangiomas, along with monthly blood tests to check her thyroid. These regular trips and specialist appointments have now become part of everyday life for the family.
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<div>During this admission, Lulu also underwent a sleep study, which revealed that her oxygen levels were dropping to as low as 50% while she slept. She has since been diagnosed with obstructive sleep apnoea, caused by the severity of her enlarged tongue blocking her airway. Lulu now relies on oxygen delivered through nasal tubes to help her breathe safely and is expected to remain on oxygen for the foreseeable future until she is able to undergo her tongue reduction surgery. It is a constant reminder of just how much this tiny little girl is fighting every single day. This is another significant hurdle in Lulu's journey and further highlights the complexity of the care she requires.
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<div>Since Christmas, Chris has been unable to work, while Daisy's entire focus has been caring for Lulu and supporting their family through every hospital stay. Between medical appointments, specialist care, frequent travel to Brisbane, accommodation, everyday household expenses, and the many ongoing costs associated with Lulu's care, the financial pressure has become overwhelming.
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<div>We're asking for your help to ease some of that burden.
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<div>Every donation, no matter how big or small, will help cover medical expenses, travel, accommodation, everyday bills, and the ongoing specialist care Lulu needs. Most importantly, it will allow Chris and Daisy to focus on what matters most, being by Lulu's side while also creating precious moments with Zephyr and Kai during this incredibly difficult time.
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<div>If you're unable to donate, simply sharing Lulu's story would mean the world to this family.
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<div>From the bottom of our hearts, thank you for standing beside Chris, Daisy, Zephyr, Kai, and little Lulu. Your generosity, kindness, and prayers will help carry this family through the challenges ahead and give beautiful little Lulu the very best chance to thrive.
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Deb Tansley

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