Aleyathiah Wilcockson was born the length of a pencil with a tumour heavier than her own body.
Subscribe now for unlimited access.
$0/
(min cost $0)
or signup to continue reading
At just 23 weeks pregnant, her mother Sharna Spears endured more than 110 hours of labour, doubting her unborn baby would survive.
Brave Aleyathiah had defied the odds by reaching age seven. But her fight was far from over.
Aleyathiah battles incontinence, serious digestion issues and an intellectual disability. The scarring from the tumour causes severe pain with too much movement and side effects of her medication inc lude nauseousness, weakness and fatigue.
From the moment the 900-gram baby was born with a 1.2 kilogram tumour below her tailbone, Ms Spears knew it would be an uphill battle.
"I remember seeing another baby on a bed in the Neonatal Intensive Care Unit and I thought that was her," she said.
"But then I saw Aleyathiah with so many tubes everywhere and the huge growth. I just bawled - not out of excitement to see her, but out of fear for what would come next."
There was little hope Aleyathiah would survive the flight from Canberra to Westmead Children's Hospital, let alone the multiple surgeries required to remove the tumour.
The surgeon told Ms Spears the operations were the most difficult in her 20-year career. Incredibly, she successfully removed about 90 per cent of the growth, before reconstructing part of Aleyathiah's body.
Aleyathiah now attends Queanbeyan West Public School, but can enjoy few of the activities most seven-year-olds enjoy.
"She wants to ballet, but I can't count the number of schools I've called who say they can't cope with the responsibility of her problems," Ms Spears said.
"She is in a support class at school and is unable to go to the toilet with her bowels."
"Often she cries for hours in pain."
The family grew up in the small NSW town of Coolagolite, about 260 kilometres north of the ACT. Tired of the constant travel to Canberra for tests, procedures and specialist appointments, they packed up and moved to the capital.
Ms Spears had remained unemployed since Aleyathiah's birth. She said the family was struggling to rely on her husband's income, with three other children to look after and never-ending medical costs. Toileting aids and medication cost about $300 a week.
"We have exhausted in our savings," Ms Spears said.
"I've had to sell our belongings so many times just to make ends meet."
"She has so many problems that we keep getting passed around from specialist to specialist. Sometimes she needs four appointments a week."
With their support network 3.5 hours away, Ms Spears turned to the Canberra community for help.
"Aleyathiah has had seven years of testing and poking and prodding; it breaks my heart that she always asks why she had to be born with a tumour."
"We don't know if she'll ever live a normal life or if the medical costs will ever stop. We just want to make it a little easier."
Aleyathiah's fundraising page is at gofundme.com/our-daughter-cant-wait-anylonger
