Community Corner
Avery Gets a Wish to Meet Belle
Apple Valley's Avery Saari, 4, and her family received a trip to Florida and tickets to Disney World and other attractions from the Make a Wish Foundation of Minnesota. Avery suffers the effects of a congenital CMV infection.
Avery Saari and her family went on trip of a lifetime this past week, thanks to the Make a Wish Foundation of Minnesota.
With her parents and big sister in tow, 4-year-old Avery flew to Florida on Sept. 30 for a seven-day, six-night vacation at Give Kids the World, a resort for children with life-threatening illnesses and their families.
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Avery suffers from the effects of a congenital CMV infection that—said her mother, Jodi—caused her brain to stop growing while in the womb. She has cerebral palsy and multiple seizures, and she is fed through a feeding tube.
On the family's itinerary were visits to Disney World, Universal Studios and Sea World, as well as opportunities for such traditional vacation pastimes as mini-golf, fishing, swimming and horseback riding.
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“Avery will get to meet Belle,” Jodi said last week. “Belle is her favorite.”
Although she is not verbal, Avery shows her affection for Belle—the main character in the fairy tale and, more recently, Walt Disney film “Beauty and the Beast”—by waving her arms.
While her family’s Florida vacation was the first time Avery flew on an airplane, she is no stranger to travel. Despite of being bound to a wheelchair, she and her family regularly go tent camping in northern Minnesota.
“We’ve adjusted our lives, but we haven’t changed our lives,” said Jodi. “We want Avery to experience the same experiences that her sister [6-year-old Brenna] had. That’s the right thing to do for our family.”
Avery and her family officially received their trip tickets from Make a Wish during a recent pizza party at the Old Chicago restaurant in Apple Valley. Roughly 25 folks—mainly friends, family and care-givers—attended the event.
“The girls got a lot of princess stuff and jewelry at the party,” Jodi said. “They had such a good time.”
This was an ideal time for Avery to take her Florida getaway, Jodi said. Her health generally has been good recently, and she has not had an overnight hospital stay since having her tonsils and adenoids removed in January 2011.
“She’s in a good place with her health right now,” said Jodi. “But with a child with CMV, things could change quickly.”
WHAT IS CMV?
CMV, or cytomegalovirus, is a common infection that typically is harmless, says the Centers for Disease Control and Prevention. It’s spread through saliva, urine or other body fluids, and it can be transmitted from a pregnant woman to her fetus.
Most people are infected by CMV by the time they reach 40, and many of them don’t know they have it. However, CMV is more dangerous to babies infected before birth. The CDC says:
About 1 in 150 children is born with congenital CMV infection. And about 1 of every 5 children born with congenital CMV infection will develop permanent problems (such as hearing loss or developmental disabilities) due to the infection. Infants and children who are infected with CMV after birth rarely have symptoms or problems.
Jodi has been an advocate for CMV awareness since learning Avery was infected shortly after her 20-week ultrasound. She wrote a blog about Avery and CMV that posted on Patch in June 2011.
Click here to read that blog.
Click here to go to Avery’s Journey, a website Jodi created to chronicle Avery’s life and to provide more information about CMV.
LEADING A LIFE AS NORMAL AS POSSIBLE
The Saari family tries to lead a life that’s as close to normal as possible, Jodi said. For instance, she and her husband, Matt, have careers and Avery and Brenna go to District 196 schools.
Avery attends Early Childhood Special Education preschool classes three days a week at the district’s Early Childhood Learning Center in Apple Valley. She receives physical and occupational therapy there, and she is learning to communicate with the help of a device that Jodi says looks like a game show button.
“She loves preschool,” Jodi said. “She gets to interact with other children, which is so good for her.”
Jodi says her family tries to get the most out of everyday because Avery’s future is uncertain.
“There is one thing for sure about CMV,” she says, “we don’t know how long we’re going to have her.”
