Scott and Sharla Baillie never gave up hope for their daughter, Isabella.
“Hope is the last thing you can believe in. We almost lost hope but there are people who give you hope and they didn’t give up on us or her,” said Sharla.
Last February, Sharla went to pick up Bella (as the family calls Isabella) at Harwood school, not knowing it would be a day that would change the family’s life.
“I went into the classroom and there she was playing and interacting with her classmates for the first time ever. She ran up to me and said, ‘Guess what Mom? I can write my name!’ And she had written her name for the first time ever. I broke into tears,” she said.
“From that moment on, it was like a light clicked on for her. She could stay in class for longer times and she started to sing the alphabet like she had done before and she speaks clearly.”
While it is not unusual for Grade 1 students to write their names or know the alphabet, for Bella, it was a miracle.
She had been a lively, bright three-year-old in the summer of 2006, playing with her older sister and cousin in a backyard pool. The two other girls found Bella face down in the pool, pulled her to the side and kept her head above water while they called for help. A family member who is a nurses’ aide did CPR and Bella was checked by paramedics and her family doctor. Her parents were told that she had had a near- or dry-drowning experience, that no water had entered her lungs and she would be fine. Everyone breathed a sigh of relief at tragedy averted.
“I noticed a change in her soon after, she regressed in some ways, but was told it was the shock she had had,” said Sharla, who also had a two-year-old at the time and was pregnant with her fourth child.
Bella had her first seizure in early September.
“She started to go down really fast. She was having as many as 160 seizures an hour, some invisible to us, some visible,” said Scott. “She forgot her name, everything that had happened before the accident, she couldn’t feed herself and had to be potty-trained all over again. She couldn’t hold a train of thought long enough to communicate. You wouldn’t know what you were dealing with from day to day.”
Bella was back and forth to Children’s Hospital in Vancouver. The diagnosis was undiagnosed seizure disorder. She was treated with a variety of medications and just when something gave her parents a glimmer of hope, things would get worse again.
In April 2007, Bella had a massive seizure at pre-school and was rushed to the hospital in Vernon and then by air ambulance to Children’s Hospital. Scott went with her and found himself in Vancouver having forgotten his wallet in the haste to get to Bella. Sharla was at home in a panic and unable to do anything with the other children and a three-week-old baby.
It was then that staff at NONA, which had been working with the family, contacted the Variety Club on their behalf.
“I got a call at the hospital from someone at the Variety Club telling us they would take care of everything,” said Scott. “We were at the coast for a total of about eight months and they helped with all the transportation and accommodation at Easter Seal House. I don’t know what we would have done without the help. We had been trying to pay for things ourselves but it was tight financially. I was missing work and Sharla was on maternity leave. We came close to losing our house, it was that bad.”
Scott worked as much as he could — he works at SUN FM in Kelowna — while Sharla, who was store manager at Complete Pet Mart, had to be home with the children.
Bella continued to have seizures and her health and behaviour were unpredictable.
“On May 22, 2009, our 10th anniversary, which should have been a wonderful celebration for us, we had Bella at the hospital for a check up and the doctors told us they couldn’t do any more for her. That destroyed us. Scott shut down and I went into survival mode to care for the children,” said Sharla.
Scott said candidly, “I don’t know how our marriage survived those years. There has been a lot of guilt, shame and remorse and it was tough to rely on others but we have dealt with that. Each time we could see some changes for good with a new medication, then it would fail and we’d be back where we were with Bella falling down in seizures.”
In the fall of 2009, they took a risk with a new medication.
“We could see the change in her by February. She was down to one seizure a day. By March she could remember for longer periods of time. She was coordinated enough to use the two-handed control for the Wii. She could have a birthday party because she understood that it was her birthday,” said Scott.
“It was a miracle that she got better. Variety bailed us out, I don’t know what would have happened without them. That’s what your money does when you give to Variety. It helps families. We want to tell our story to give back.”
Bella, now seven, continues to improve and learn. She can make plans in advance and carry through with them. It will take time to make up for lost time and it is possible that she could regress again but the family is enjoying being back to a normal household.
“Things are so good, I’m afraid to believe it’s really good,” said Sharla. “There are so many people who have been so good to us, the Variety Club, the hospital, the public health nurses, the teachers and the school and pre-school.
“We want people to know how we were helped, that Variety is there with hope when you think there can’t be any more hope.”
Bella and the family will be on the Variety Club Telethon Feb. 13 on Global TV between noon and 4 p.m. and their story will be featured on the Global morning news the previous week.
