A beautiful blonde girl, eight years old and grinning from ear-to-ear, bounces down the stairs. She’s in a nightgown with her hair pulled back and she’s carrying an iPad that’s playing an animated music video about ice cream.
When she reaches the bottom of the staircase, she plops herself on the barstool closest to her—her stool; that’s a lesson her cousin learned the hard way, having been pushed from it, when his young cousin decided to take a load off.
By all accounts, this little girl looks and acts like a regular eight-year-old. She plays, she smiles and she loves horses, skiing and swimming, as well as her two brothers, Angelo and Thomas.
But, looks can be deceiving.
Bella Tiesenhausen isn’t a regular eight-year-old.
Bella has Hypoxic Ischemic Encephalopathy. She was diagnosed before her second birthday. That was the day her family’s world came crashing down.
Hypoxic Ischemic Encephalopathy is caused by insufficient oxygen to the brain. For Bella, this occurred during her last weeks in the womb, when her umbilical cord was tightly wrapped around her neck. The result is cerebral palsy, a non-progressive impairment of motor functions that causes physical disability as a child develops.
In Bella’s case, it has caused developmental delays—she currently functions at the level of a two-year-old—deficient gross and fine motor skills, neural-developmental delay and cognitive impairment.
To this day, the petite blue-eyed girl has never spoken a word.
Three years ago, at the age of five, Bella’s future was bleak. Her doctors could give little hope or assurance that anything would ever improve.
Unhappy with the outlook, Bella’s parents began looking elsewhere for help.
“We knew at the time that we had to look at alternatives because not doing anything meant we were losing our child, or we had already lost her, because we were never going to gain anything more,” remembers Bella’s mom, Connie Tiesenhausen. “We had talked to our neurologist about stem cells and he said it was just too early—everything was experimental.”
Although stem cell research was just entering clinical trials in Canada, Connie kept researching and “quite by chance” came across a clinic in Germany.
It was there in 2010 that Bella’s stem cells were harvested from her hip and then reintroduced into her body through an IV.
“We actually didn’t tell anybody when we went because we didn’t want any of Bella’s Kindergarten teachers to know, we didn’t want speech therapists to know, we didn’t want physio to know, because we wanted a really clean picture from them if they thought it had helped.”
Sure enough, after a few months, when Connie and her husband Hjalmar met with the entire therapy team, “they said, ‘Wow. When you guys came back from holidays, that rest really did quite some good for Bella, because now she’s doing things she’s never done before.’”
Almost overnight, Bella had gone from being an introvert, wrapped up in her own world—not even flinching when a door slammed right beside her—to engaging with the students in her class. She began communicating, using her hands to gesture and point. She began paying attention to what was happening around her and she was suddenly able to understand multi-step commands.
“Before we went she would only do one-step commands, like pick up the toy. Then after we went we could say, ‘Pick up the toy, Bella, and go put it in your toy box in your room,’ and she would do it.
“It sounds like something so simple for somebody who’s five, but it was huge for her because she was never able to do that.”
Since the success of that first treatment, the Tiesenhausens have been planning to take Bella for a follow-up, but it wasn’t until she started “bolting” that the family accelerated the search for the right clinic.
“Bella’s getting fast and she’s getting big and she’s becoming quite a physical force to reckon with,” said Connie, noting that it can sometimes take an hour just to get Bella into the car after school because she runs off as soon as she’s out of the building.
This is especially concerning because Bella is unaware of the dangers around her, like traffic, water, wild animals, severe weather or strangers, and, because of her impaired communication, she’s unable to call out for help.
“Last year at school, she bolted and panic set in very quickly,” remembers Connie. “It’s terrifying when you have a child who could possibly get lost and she can’t even say her name.
“Fortunately, with the help of other parents, we found her, but that 15 minutes seemed like a lifetime.”
In hopes of improving Bella’s cognition, so she can recognize these dangers, the Tiesenhausens did extensive research—talking to doctors and parents of children who have undergone the treatments—and settled on a clinic in Panama.
Bella, Connie and their close family friend, Marla Pollock, will travel there tomorrow, Oct. 4, for a week of treatments.
“I’m not afraid of the procedure at all,” said Connie, thinking ahead to the trip. “I feel very comfortable with that based on all of the mother research—if you will—that I’ve done.”
The stem cells that will be transplanted into Bella’s body next week will come from a donor.
The cost of the week-long treatment is $16,500. With the cost of travel, accommodation and food, Connie expects the total expenses will be around $23,000.
To assist with the costs, Wild Orchid Salon and Spa held a fundraiser called Beauty for Bella on Sept. 24.
On that day, the salon raised $5,000, by hosting a raffle of items donated by local businesses and donating all of its proceeds and gratuities to the Tiesenhausen family.
A few days later, Jasper Rock and Jade also held a fundraiser, donating all of its proceeds from the day’s fudge sales to the family.
“The town itself, the community, is so awesome and pulls together when people need help and we feel really grateful for that,” said Connie.
Over the years, the family has also received support from the Jasper Volunteer Fire Brigade, the Fairmont Jasper Park Lodge Bellman’s Auction, the Lion’s Club and friends and family.
“Without all of them, life would be even more difficult.”
As the treatment draws closer, Connie said although she’s not scared for Bella, she's anxious about what could be.
“What keeps me up at night is what may possibly be or what could be, what might happen.
“I’m hoping mostly for her cognition and some speech.
“My god, if she says ‘Mama’ or when she says it, I think I’ll be a puddle for days. That’s something that a lot of parents take for granted and don’t really understand.”
