Alivia Code, 7, underwent surgery last week to try to remedy the effects of Rasmussen’s Encephalitis, a rare inflammation of the brain that strikes only one in every half-million to a million people.

A benefit to help Alivia

June 29 fundraiser planned for Surrey parents coping with their daughter's sudden serious illness.

It’s as if it happened overnight.

One day, Alivia Code is a healthy little girl who loves music and crafts, and the next, she is dazed and unresponsive.

Alivia, a smart “girly-girl” who loves crafts and music, was walking to school with her mom last September. Early in the school year, she had only just started Grade 1 at Surrey’s William F. Davidson Elementary.

As they approached the school, Alivia suddenly began walking in a circle, gazing up at the sky. Unsure what she was doing, her mom said her name several times, trying to get her attention. Alivia didn’t respond.

A trip to the hospital resulted in a battery of tests and it was soon confirmed Alivia had suffered a seizure. It was her first, but there were many, many more to come. A scan showed she had inflammation on the left side of her brain, and eventually, doctors reached a diagnosis.

Alivia, her parents were told, had Rasmussen’s Encephalitis, a rare form chronic inflammation of one hemisphere of the brain. There is no known cause, but it occurs most often in children and is estimated to strike only one in every half-million to a million people.

“It was almost like she was fine one day, and then not the next,” said her grandma, Karleen Sabourin. “This child is a very intelligent, happy child – full of spirit.”

Over the following months, between doctor’s visits, Alivia began to display the fast-progressing symptoms of the disease: brain injury, loss of speech and partial loss of the ability to use her right arm. She can walk, but with a limp and a brace on her right leg.

Now seven years old, she’s faced multiple treatments and been on a steady stream of medications. Since April, due to complications from the disease and drug therapy, Alivia has been in B.C. Children’s Hospital.

On Wednesday, she underwent an eight-hour brain surgery. It’s hoped the operation, called Functional Hemispherectomy, will ease the seizures, which she now has between 10 and 12 times an hour.

Because someone has to be with her 24 hours per day, her dad, the sole income earner for the family, took a leave of absence from his work as a security guard in May to spend time with Alivia and his wife.

That, says Sabourin, has made an already heart-wrenching situation a financially stressful one for the family.

The couple doesn’t even own a car, so they either take transit to the hospital daily or hitch a ride with someone.

“Dad was working and then going to the hospital at night,” said Sabourin. “Then I told him ‘okay, you need to take this time.’ It’s been very difficult for them.”

To help them out with their basic needs, she’s planning a fundraiser on June 29 at Jimy Mac’s Pub in Langley (19935 96 Ave.). Tickets are $20 and include a burger and drink, silent auction and raffle.

Contributions are still being accepted for the auction and advance tickets are available by calling Karleen Sabourin at 604-767-3831 or Theresa at 604-534-5305.

A trust fund has also been set up at the CIBC at 20069 64 Ave. Contributions can be made to Alivia Code In Trust, account #6911692.

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