A baby girl has been left struggling to breathe as she battles a rare genetic disorder that has caused her tongue to grow to a dangerous size.
Lulu, from northern NSW, was born in April and later diagnosed with Beckwith-Wiedemann Syndrome (BWS), a rare condition that causes abnormal growth in various parts of the body.
In Lulu’s case, the syndrome has resulted in severe macroglossia – an enlarged tongue so pronounced it interferes with her breathing, feeding and sleep.
Due to the severity of her condition, doctors are considering bringing forward tongue reduction surgery to help Lulu breathe and feed more easily.
Further complications have emerged, with MRIs and ultrasounds revealing Lulu has multiple haemangiomas, non-cancerous tumours, throughout her liver.
Although the tumours are not malignant, doctors are closely monitoring her as they can affect liver function and lead to complications including rapid breathing, feeding problems, poor weight gain and jaundice.
Family friend Chloe Baker has launched a GoFundMe to help Lulu’s family who live in northern NSW and must constantly travel to Queensland Children’s Hospital.
Lulu’s father Chris has been unable to work since Christmas, while her mother Daisy devotes her time to the baby girl’s care and managing the constant stream of medical appointments, hospital stays and interstate travel.
Baby Lulu (pictured) has been diagnosed with the rare Beckwith-Wiedemann Syndrome
The fundraiser is seeking help with medical expenses, travel, accommodation and everyday household costs.
Ms Baker said Daisy, Chris, and their other children Zephyr and Kai have been ‘living a reality no family should ever have to face’.
‘These regular trips and specialist appointments have now become part of everyday life for the family,’ she said.
‘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.’
Children with Beckwith-Wiedemann Syndrome also require ongoing medical screening because of their increased risk of developing additional health issues.
Lulu’s treatment regime now involves regular trips to Brisbane every three months for scans and blood tests, as well as monthly thyroid checks.
Another major setback came during a recent hospital admission, when a sleep study showed Lulu’s oxygen levels dropped to just 50 per cent while she slept.
Doctors are considering tongue reduction surgery to help Lulu (pictured) breathe and feed
Doctors diagnosed her with obstructive sleep apnoea, caused by her enlarged tongue blocking her airway.
Lulu now relies on supplemental oxygen delivered through nasal tubes and is expected to remain on oxygen therapy until she is able to undergo surgery.
Lulu’s battle in hospital comes after a tough pregnancy for Daisy.
When she was 24 weeks pregnant, she was admitted to hospital with serious complications.
To keep the family together, Daisy, Chris, Zephyr and Kai, moved into Ronald McDonald House, where they stayed from Christmas until Lulu was born at 36 weeks.
During that period, Daisy was largely confined to a wheelchair while Chris looked after her and their two young sons.
Zephyr was also required to attend a different school, with the family remaining close to specialist medical care.
