Brave girl doesn't allow disease to stop her
- Roberta Cross | February 20, 2017
In early 2011, six-year-old Bella Arcand began to have serious seizures. Bella was a strong and healthy girl, so they were totally unexpected. Her mom, Beverly Lafond, remembers the fright of running to pull Bella from a swimming pool when a sudden seizure sent her unconscious under the water.
After a battery of tests and many hospital stays, Bella was diagnosed with a rare condition called Rasmussens’ Encephalitis (RE). It affects children. Bella was suffering almost 30 epileptic seizures a day, damaging her brain a little bit each time.
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RE is caused by lesions on one side of the brain, and affects one side of the body. In Bella’s case, this was her right brain hemisphere, and it affected the left side of her body. She couldn’t walk or play like before. The only known way to stop RE is removing the affected side of the brain in a radical surgery called a hemispherictomy.
Bev was faced with this incredibly difficult choice four years ago. On January 30, 2013, Bella was surrounded by her Mom, her sister Ava, and twelve other family members from Muskeg Lake Cree Nation as she went into surgery at the Stollery Hospital in Calgary.
Bella’s eight-hour surgery was a success. But when she woke up two days later, an intense recovery began. Bella and Bev spent another five months in Edmonton at the Glenrose Rehabilitation Hospital. Ava was in Saskatoon, living with Bev’s sister Kaila, and travelling to Edmonton to visit once a week.
Bella had to learn to swallow, and was saved by a quick-thinking nurse one time when she choked. Because the right side of the brain controls the left side of the body, Bella’s motion, feeling, and sight on her left side were affected. She learned to walk again. She also learned to bike and swim again. “Swimming is my passion!” declares Bella.
Two months after leaving the Glenrose, the seizures returned. This time, a team of surgeons in Calgary performed a second operation. Because Bella’s brain had developed so many new ways to work, her recovery was faster.
Slowly she has been regaining the use of her left arm, and her coordination is amazing. She swims, and dances, and soon will be taking horseback riding lessons. Bella’s recovery takes a lot of physical work as her brain re-wires, and she’s often really tired. Bev describes Bella and her recovery as “inspiring, courageous, and awesome!”
Bev is always at her side, and at school it is her trusted EA, Mrs. Braun. Ava is a loving sister, considerate of Bella and the ways their family life has changed over the past six years. “I’ve learned to be patient,” says Ava.
Bella has learned about asking doctors questions, “because it’s my body,” she says. “Will it hurt? Can I do sports?” Bev agrees, saying “I’ve come to learn to trust my gut and Bella. The doctor has just an opinion. Usually a good one, and well-thought out, but I have to ask questions and decide.”
Despite their own financial and personal challenges living with RE, Bella, Ava and Bev dedicate their energy to raising money for the Childrens’ Hospital of Saskatchewan. Bella explains: “because we need a better hospital for children, we need a place where people can be comfortable.”
Bev takes Bella to the RUH at least once a month for treatment, and often many more times. The emergency room is not a friendly place for kids and families, agree Bev and Bella.
Being with family is important for recovery. Right now, says Bella, “you have to leave your home. Leaving your home is bad.” Other things that are important in a childrens hospital for her are that “family members need to be able to come to the playroom, and I hope the new hospital has comfy beds, and good food in the cafeteria.” She also mentions having childrens’ activities, and single rooms so families can be together.
Bev is grateful for all the quality care her family has received in Saskatoon. But she does recognize how important it is to have surgeons, staff, and a facility that understand the needs of children and their parents here in our province.
Bella has had some amazing experiences thanks to the Childrens’ Hospital Foundation. They helped connect Bev to free flights to Edmonton for the surgery, and made it possible for Bev and Bella to meet Garth Brooks. “It was awesome, he put his hand on my shoulders,” says Bella. Last summer Bella threw the first pitch at a Blue Jay’s game. “And I got to make a cookie dough blizzard,” she says, and smiles.
If you’d like to support Bella’s fundraising, please donate at: https://childrenshospitalsask.ca/p2p/bella-arcand-raising-funds-for-the-15th-annual-childrens-hospital-radiothon/