Mum's desperate battle to keep seriously ill daughter alive past age of five
An Australian family is desperately raising money for their toddler to receive life-saving treatment to help her live past the age of five.
Melbourne mum Leanne Shaw told Yahoo7 her daughter was diagnosed with stage four high-risk Neuroblastoma, a rare and aggressive tumour, in April.
The cancer affects the adrenal nerve cells and has spread across Ava’s body. She has a primary tumour in her abdomen in the adrenal gland above her kidney.
At just two-years-old, Ava is undergoing gruelling rounds of chemotherapy and is in hospital three weeks a month.
Ms Shaw, who is 33-weeks pregnant and working to support her family, said she first noticed something wrong with her daughter just after her second birthday.
“She had been an absolutely perfect, happy, bubbly little girl from birth and was absolutely fine right up until she turned two,” Ms Shaw said.
“Eleven days prior to her being admitted, just after her second birthday, she was waking up almost every hour crying inconsolably, didn’t want to play, was lethargic and didn’t really want to eat.
“She had temperatures above 38C almost every day and we took her to the doctors three times.
“The first two times we were told it was viral and the third time they thought it was a UTI and we got antibiotics.”
On April 5 Ms Shaw and her partner James, who has since given up his job to care for Ava, took their daughter to the Royal Children’s Hospital in Melbourne where she underwent a full-body MRI.
“On the morning of the 7th we came into the room and there were six doctors. As soon as I saw them I knew it wasn’t good. They told us there was no infection, however they found tumours,” Ms Shaw said.
Family desperate for life-saving treatment
A GoFundMe fundraising page has been set up to help raise $350,000 for Ava to receive a trial treatment to stop her cancer from coming back once she is in remission.
The family will have to travel to New York to receive the treatment at the Memorial Sloan Kettering hospital.
Patients have to fund the entire cost of the vaccine, which is estimated about $225,000, and the family will have to live there for a year while Ava receives the treatment.
The vaccine will stop Ava from relapsing, which happens in about 75 per cent of people who have her certain type of cancer.
Ava is expected to be in remission in March next year and the family will have a small window then to head to New York to start treatment, before the risk of relapse increases.
‘As a parent you’ll do anything’
With the aggressive cancer Ava may not live past the age of five, but Ms Shaw said the vaccine gave children a much better chance of survival.
“As a parent you’ll do anything to make sure a child has the best chance at life,” she said.
“We couldn’t sit back or ever forgive ourselves if this is her only chance of surviving.”
Ms Shaw said Ava was suffering some anxiety as a result of her chemotherapy as it made her fall very ill.
The chemotherapy causes Ava to have mucositis and break out in blisters. She has basically no immune system and suffers from pain in her joints and bones as her blood cell count increases after chemo.
The intense chemotherapy is causing Ava to lose hearing and it is likely she will be infertile as she grows older.
“She’ll have serious side effects she’ll have to live with the rest of her life,” Ms Shaw said.
“As an outsider you think ‘how do you even cope’ but we have no choice.
“We have so much support around us so that’s a big help and the fact that Ava can bounce back in a sense to a happy, bubbly two-year-old helps us continue our job to make her life as normal as it can be.”
The family has so far raised more than $40,000 and Ms Shaw said they were grateful for the support.
“I have pushed myself very hard to provide for myself and my family and it was very hard to accept I couldn’t do this on my own. I don’t take it lightly asking people for money,” she said.
To donate to little Ava visit the family’s GoFundMe page and follow her journey here.
