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B.C. family faces 3-year respite funding wait to care for son with rare brain cancer

Click to play video: 'B.C. family faces 3-year respite funding wait for son with brain cancer'
B.C. family faces 3-year respite funding wait for son with brain cancer
WATCH: A Surrey family whose five-year-old son is suffering from a rare, incurable brain cancer says they've been told by the B.C. Health Ministry they'll have to wait three years for respite funding.

Showing off his budding muscles and Christmas presents in his Surrey, B.C., home, Ansh is a five-year-old with big brown eyes, a bright smile, and a brave face.

Last spring, Ansh landed in BC Children’s Hospital with unusual symptoms. A battery of tests revealed the tragic news that Ansh has diffuse intrinsic pontine glioma, a rare, aggressive and incurable cancer of the brain stem. He received some radiation to slow its progress but has since been sent home.

As his condition slowly progresses, mom, Chintan Shah, and dad have become his full-time caregivers.

“I can’t leave Ansh alone,” his mother says. “He keeps on falling down and he’s having trouble swallowing. His speech is slurred. He’s mumbling.”

With Ansh’s twin brother to care for, bills to pay, and employment insurance running out, the family applied for respite care to relieve some of the pressure, but were told the waitlist was three years.

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“I don’t think, and the doctors at the children’s hospital don’t think, that Ansh has even three years,” Shah said.

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“As families, as parents, what the government wants us to do, I fail to understand. like we are also taxpayers.”

Click to play video: 'No nurses for family’s respite care'
No nurses for family’s respite care

Global News has reached out to the Ministry of Health.

Shah says staff at the boys’ school have been very supportive, but Ansh’s condition means he requires extra support, and the family doesn’t want to lean on the school too much.

“I feel so helpless,” she said,

“Moreover, instead of spending quality time with him, I have to worry about money, about paying the bills, paying the rent.”

For now, the family is using money from a GoFundMe their friends set up and are hoping to have their request for respite expedited.

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None of the struggles stopped Ansh from trying to get into the holiday spirit.

After his stay In BC Children’s Hospital, he was featured in the hospital’s calendar as an elf. Even though it’s the 2025 calendar the family has already hung it up in their home, because they’re not sure Ansh will see another Christmas.

Click to play video: 'Dramatic holiday gift delivery from ERT to kids at BC Children’s Hospital'
Dramatic holiday gift delivery from ERT to kids at BC Children’s Hospital

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