Wish child hopes to share story

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Jennifer Vivier was in trouble, big trouble.

It all started about four years ago when the then 13-year-old Metis from Edmonton was living in Calgary and having difficulties with her mobility.

She couldn't walk. She fell out of bed and couldn't get up by herself. She couldn't dress herself or eat without someone else's assistance. Her sense of balance was gone, because her nervous system was impaired, said her mother, Barbara.

The deterioration was rapid, "like a matter of days, one week at the most," said Barbara.

Jennifer's family got her to a doctor and anxiously awaited the results of some blood tests. When the news came back, it wasn't good; Jennifer was diagnosed with having Systematic Lupus Erythematosus, a chronic and severe form of the illness commonly known as Lupus.

Prior to her diagnosis, her mother explained, she was always a "healthy and active child." Imagine the shock when informed her child had Lupus.

"Her's is one in a million because it also involves Chorea which doesn't usually accompany Lupus," explained Barbara. Chorea is a movement disorder and a rare complication. It's that combination of Chorea and Lupus that makes Jennifer's ailment so scary.

The girl was put on medications, including a steroid. However, the steroid caused so much swelling, Jennifer withdrew from many of her former activities. She felt compelled to drop out of school too.

"I lost a lot of my friends. They didn't understand," explained Jennifer. Even her brother Jake had a tough time accepting it.

"He'd get moody and had a hard time with his emotions," she explained.

Jennifer was on steroids for several months and had to go through a complete change of wardrobe. That wasn't easy considering she hails from a single parent family that wasn't well off. But what really bothered her was her appearance. Jennifer found it difficult to accept the new her. It was that self-consciousness that caused her to retreat from the world around her.

Although scared, Jennifer was grateful for her life and her family whom she spends more time with now. She also admits to treating others "better" since her diagnosis.

Apart from swelling of the brain, said her mother, she developed pneumonia a few times, heart problems and moderate damage to her kidneys.

Last summer, she hit the front page of the Edmonton Journal as one of the many thousands of faithful who make the pilgrimage to the healing waters of Lac Ste. Anne, west of Edmonton.

Around the same time, she was designated as a "wish child" by the Rainbow Society of Alberta which tries to make dreams come true for those suffering with life-threatening or chronic illnesses.

The society's wish co-ordinator, Roxanne Rosenberg, explained they grant about 30 wishes per year after considering a child's age, interests, medical condition, and doctor's advice.

Jennifer's three wishes were a shopping spree, a trip to Hawaii, or a computer. On Dec. 22, her wish for a computer was approved.

One project Jennifer really wants to accomplish is to tell her story of living with Lupus with the hope of having it published. That's where the computer will come in handy.

Jennifer continues to treat her illness with a variety of prescription drugs and chemotherapy treatments. She's also attended a couple of traditional sweats and claims to feel good - physically, mentally and emotionally.

As for spiritually, Barbara said the initial shock of Jennifer's illness not only created a stronger bond between family members, but with religion as well.

"I started going to church more regularly, especially Sacred Heart [Parish] because it incorporates some Native spirituality," said Barbara, who prays that her daughter's condition will improve.