Raising awareness of a common but little-known disease
Tuesday, 17 November 2009
Apple Valley mom forms Minnesota chapter of Stop CMV
PHOTO: Apple Valley resident Jodi Saari founded a Minnesota Chapter of Stop CMV, a national organization that raises awareness about cytomegalovirus, a virus that causes birth defects in unborn children, after her daughter Avery was born with developmental delays from the disease. - Photo by Jessica Harper
by Jessica Harper
Thisweek Newspapers
When Jodi Saari of Apple Valley came down with cold-like symptoms during her second pregnancy, she thought nothing of it.
However, when a 28-week ultra-sound revealed that her child’s brain was
not developing normally, Saari realized it was something much more
serious.
Eight weeks later, she was diagnosed with cytomegalovirus, a virus that is in the same family as the chicken pox.
CMV remains a relatively unknown illness by the public, yet it is the most common virus transmitted to a pregnant woman’s unborn child, according to the Centers for Disease Control and Prevention.
“It’s not something you expect when you are expecting,” Saari said.
As a result, Saari’s daughter, Avery, was born with severe cognitive and physical delays, and suffers from seizures.
At 1 year old, Avery’s cognitive ability is similar to that of a 4- to 5-month-old infant.
She cannot speak, sit on her own or feed herself, but can occasionally roll over.
She also has partial blindness and minor hearing loss.
Caring for Avery’s many needs comes with its challenges.
Avery requires constant bottle feeding to increase her weight, as well as physical therapy sessions to improve her motor skills.
Balancing Avery’s needs with that of their active 3-year-old daughter, Brenna, can also be a challenge for Saari and her husband, Matt.
“The biggest challenge isn’t for Jodi and I, it’s for Brenna,” Matt said. “She sees her friends interact with their siblings, and she can see there’s something different. It’s hard for her to understand. I think she wishes she had a more active sibling.”
Whether and to what extent Avery will advance as she grows older remains a mystery, Saari said.
“There are days when I pray I’ll hear her say ‘momma,’ but I know that probably will not happen,” she said.
For now, the couple is hoping for the best but is planning for the bleakest outcome.
Avery will likely require a wheelchair and constant care as she grows up.
Over the last year, Saari searched for information on CMV and local support groups, but found none.
This inspired her last September to start a Minnesota chapter of Stop CMV, a national CMV awareness organization that was founded in 2003.
The goal of the organization, which is seeking nonprofit status, is to educate the public about the dangers of CMV and how to prevent it from spreading.
Few healthy adults and children develop symptoms, yet it can cause severe developmental delays in unborn children if a pregnant woman contracts the virus.
According to the CDC, one out of every 750 children are born with or develop developmental disabilities due to CMV.
With the Minnesota Chapter still in its infancy, Saari has focused primarily on getting the word out, but hopes to eventually create a local support group for families affected by CMV.
While Saari has been working to build a support network for other families, her employer, Goff and Howard, a public relations firm in St. Paul, will be sponsoring a benefit to raise money for Avery’s care.
The benefit will be from 6 to 9 p.m. on Nov. 18 at Bar Abilene in Minneapolis.
Bar Abilene will donate $3 for every margarita sold and there will be a silent auction.
A portion of the donations will also go toward the Minnesota Chapter of Stop CMV.
For more information on the benefit go to www.averysjourney.com.
For more information on Stop CMV, go to www.stopcmv.com.
E-mail Jessica Harper at:
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News 
PHOTO: Apple Valley resident Jodi Saari founded a Minnesota Chapter of Stop CMV, a national organization that raises awareness about cytomegalovirus, a virus that causes birth defects in unborn children, after her daughter Avery was born with developmental delays from the disease. - Photo by Jessica Harper
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