South Okanagan Children’s Charity

Sunshine Fund - Ciara's Story

The Sunshine Fund has helped many families over the years, one of them is Ciara and her family...

When you meet Ciara Walls, the first thing you learn about her is how to spell her name correctly.

"It’s Sierra with a C," she tells you full of confidence.

The active and optimistic teen doesn’t stop there when setting the record straight.

"I am unique. I have a condition that is very rare. I have Hashimotos Encephalopathy," she adds as if reading from a medical journal.

Hashimotos Encephalopathy is a neuroendocrine disease that is considered to be very rare and potentially deadly. It can be triggered by stress and fatigue and can cause a number of different symptoms including headaches, comas, memory problems, stroke-like deterioration and seizures. Doctors have told Ciara they believe her to be the only child in Canada with the condition.

Ciara’s charisma, courage, and perhaps even her youth, allow her to elaborate about her condition even further: "I’m going to (BC) Children’s (Hospital) to have an operation for it. They’re going to write about it in the medical journals afterwards."

Her single mom, perhaps 50-feet away to give her independence but close enough she can rescue her daughter should she have one of her many seizures, says she agreed to the operation because doctors assured her the surgery wouldn’t change her personality.

"Look at her. She’s so upbeat. I would never want that to change," says Ciara’s mom Jacki.

Even before her now pretty, blonde-haired, straight ‘A’ 15-year-old student collapsed at age 12 and went into a granmal seizure and then a coma for 22 days did Jacki face serious tragedy in her life.

A difficult separation and loss of another daughter, who died after being hit by a speeding car at the innocent age of five, marked her earlier years. As expected, she still recalls the accident vividly where she and her daughter at that time were trying to have a summer vacation. Long after learning the hospital could not revive her daughter did friends gently suggest she should have another child. A little more than a year later, a long came Ciara.

"I would have liked to have known my sister," says Ciara who, like her mom, remains focused on the issues of the day and is anything but sullen when it comes to carrying on.

Jacki is quick to respond when asked how she keeps from becoming overwhelmed by two stressful stories of which one she is still living.

"I think I’ve just taught myself a way to cope. I have to – it’s my daughter, she’s my life.   Ciara keeps me going - she thinks she's unique for her existing condition, but it is her relentless determination and contagious spirit which makes her special."

While enjoying a couple of days of recreation before tackling long hospital days ahead, Jacki and her daughter explained initial recovery after the surgery was anticipated to be three to seven days.

The surgery itself was expected to be a four to six hour procedure that had been performed at Children’s Hospital by neurosurgeons many times before. The difference this time, explains Jacki, and the reason why it would be documented, was because no one with this condition had ever had the brain surgery before. This factor was also why doctors wanted to take a brain biopsy from Ciara so that they could further study the disease.

The agreement to have the biopsy done was for reasoning typical of Ciara. Her mom explains she always wants to help other kids she sees as less fortunate than herself. This was another way of doing just that.
"She gets very sentimental when she sees things like kids in wheelchairs. Her heart goes out to the little ones  She just wants to do whatever she can," says Jacki.

Only days after the surgery that left Ciara with more than 200 hidden stitches on her head and a missing left temporal lobe were the two on their way home to Penticton, BC to finish the recovery process. They are optimistic about her recovery and Ciara is already talking about riding her bike, walking her pets and a long list of other activities she wants to pursue now that she can hope to be seizure free.

Says the typical teen regarding plans for the summer: "I want to party with friends with no adults around."

Her typical mom is not so sure about the idea and is quick to caution her when suggesting it. The two, however, are completely in agreement when it comes to dealing with possible outcomes from the surgery.

"We are going to reach for that ray of sunshine no matter what…even if we are sent a few clouds along the way."  "We’re a team and it’s us. Whatever the world is going to give us, we’re going to deal with it."

(written by Stephanie, a free-lance writer)

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