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Baby with rare cancer, brain abnormality fights to survive

Radio New Zealand logo Radio New Zealand 11/04/2019
a person sitting at a table and smiling at the camera © Provided by Radio New Zealand Limited

An Auckland woman whose daughter needs surgery for an extremely rare condition has sold her business to help pay for the treatment she can't access in New Zealand.

Rita Li needs to pay for surgery in China for her two-year-old daughter Catherine, who has a rare form of cancer and a brain abnormality that causes seizures.

Her story has been one of the biggest in the New Zealand Chinese community after Chinese media SkyKiwi reported on it last week, and over $200,000 have been raised on Givealittle and other platforms since.

Ms Li's daughter Catherine was diagnosed when she was six-months-old with right frontal cortical dysplasia that can cause epilepsy.

She suffered spasms and her brain was shrinking.

Ms Li said she was told an invasive specialist surgery - Stereoelectroencephalography (SEEG) - could help Catherine's condition, but the treatment wasn't available in New Zealand.

Hence she has been travelling with her sick child to China and paying for surgeries there.

She said, in China, the wait was shorter and doctors were likely to be more experienced because they dealt with more cases.

"Considering her condition, we're literally running against time. I can't waste a single day. Every time the spasms attack her, lots of her brain cells are damaged, and the damage is irreversible," Ms Li said.

A month after Catherine had major surgery to suppress her seizures in 2017, she was found to have hepatoblastoma - a rare liver cancer.

She had two-thirds of her liver removed and started an eight-month course of chemotherapy.

Not long after, treatment of her spasms resumed. Nine holes were made in her head and electrodes were inserted.

To afford the treatment, Ms Li has used up all her savings, and sold her health products shop, and car in New Zealand.

Ms Li's mother also sold her apartment in China to support them.

'I can't possibly give up on her'

In the meantime, Catherine's sight in her right eye is getting worse and her brain development is severely delayed.

"Her condition is unstable. If she just has one problem, I can probably tell how much money we need. Because her condition constantly changes, I end up running out of money every time," she said.

Ms Li said relatives and friends tried to persuade her to give up on Catherine, but there was no way for her to do so.

"I can't possibly give up on her, denying her the chance for treatment. Even if she can't make it out of the surgery room, as a mum, at least I've tried my best."

Catherine's insurance only covered the treatment for liver cancer, and because they're New Zealand citizens, they don't have access to crowd-funding in China.

SkyKiwi's Sally Chen said it was one of their biggest stories recently and she was touched to see people were so eager to help the family.

"It was actually quite a surprise for me to see such a strong reaction from the Chinese community both here in New Zealand and back in China," Ms Chen said.

"Their eagerness to help and the amount of money that was raised was amazing."

Ms Li said the donations were essential to them, and she was grateful for the support.

"I never imagined we can raise such a big amount of money. My mum cried to me on the phone when she heard about it," she said.

Aside from the Givealittle page, thousands of dollars were also donated through Chinese social and finance platforms WeChat Red Envelope and Alipay.

Auckland mum Jane Li (unrelated to the family), who was supporting the family, has been organising payment on these platforms.

"She's still so young, I really hope she has a better chance of survival. The mum has already spent all they've got on her child. There's no point to give up. No matter how much we donate, I think we should help them as much as we can," she said.

Paediatric Society member David Newman said Catherine's condition was so rare that he couldn't find it in any English language medical literature.

"This is a very unfortunate situation with both hepatoblastoma and a cortical dysplasia with intractable epilepsy," he said.

"I can find no references at all in the English language medical literature, in either PubMed or Medline, to both conditions being described as coexisting."

Dr Newman said there were few neurosurgical operations done on children in New Zealand.

Rita Li flew to China this week to take Catherine to Beijing for a check-up and an operation is expected next month.

Though the surgery was high-risk, she hoped she could bring Catherine back to New Zealand for after-surgery care and treatment.

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