Menomonee Falls — When Brian and Nancy Gehrung brought home their newly adopted 6-year-old daughter Ava, they felt all the same things all new parents feel in those first few days with their child.
Excitement, nervousness, and pure joy came to mind as Nancy recalled those first precious moments together as a family about three years ago. While none of those feelings have ever waned, concern took over as the primary emotion shortly after the family's return from China, where Ava spent the first several years of her life in an orphanage.
Soon after bringing Ava Rose home, the couple discovered that she had a stroke at birth that destroyed 75 percent of the left side of her brain.
"We knew from pictures that she must have some health problems and that she is a little person like us," Nancy said, "but we had no idea of the extent of her brain damage and what that would mean for her growing up."
Ava's story is one that has caught the attention of a number of local families, including Menomonee Falls residents Bob Howe and his wife, Gloria Jean Siegel-Howe.
"She is such an amazing little girl," said Siegel-Howe, who along with her husband organized an event recently to benefit the Gehrung family.
Siegel-Howe has come to know the story through her daily visits to the Menomonee Falls Post Office where she chooses to get her mail. Many years ago, she met Ava's father Brian and has been following the story of Ava since the family decided to adopt her shortly after Brian and Nancy got married.
"Anyone who knows Brian knows he really is a terrific guy," said Siegel-Howe. "Our hearts just melted for them and we realized we simply had to do something to help this wonderful family."
One hundred and twenty five people turned out for the "Friends of Ava" fundraising event Saturday, Sept. 6, at Trysting Place Pub, raising a total of about $5,040, which Nancy said will definitely be put to good use.
At a shocking $1,600 charge per visit from Ava's epilepsy specialist, which has occurred more than 100 times in the last three years, Nancy said the family is blessed to have the majority of medical costs covered through a couple different insurance carriers. But when it comes to her quality of life, Nancy said there are a lot of expenses that the family has dreamed about that may begin to come to fruition thanks to the kindness of donations to things like the "Friends of Ava" event.
"It's things like therapy equipment, a motorized wheelchair, a lift for our van," said Nancy, who also has two adult daughters from a previous marriage. "These are things that can make it possible to appreciate the little things instead of worrying about how she's going to do her therapy exercises or get around."
In many ways, Nancy said Ava functions like a pretty happy 4-year-old who weighs in at 39 pounds and is 37 inches tall. But as a result of her brain damage, she has weakness along the right side of her body, mostly in her arms and legs, speech difficulties, cognitive delays, sensory processing issues and uncontrolled seizures. A former kitchen designer, Nancy now stays home to take care of Ava full-time.
"This was all a whole new ball game to us," Nancy said. "The bottom line is her seizures are back and doctors are talking about more surgeries once again."
Most of Ava's dozen or so inpatient visits to Children's Hospital have been to address the seizures in one way or another, including a very complicated surgery on her brain last November. While the surgery temporarily relieved the seizures, Nancy said they started back up again in May.
In addition to continued physical, occupational and speech therapy, the family now faces a choice between invasive and risky brain surgery that could result in Ava losing part of her vision or taking her to a state where marijuana oil treatment is legal and accessible to pediatric patients.
"It's all hard to see, but the seizures," Nancy said, before taking a pause to collect her thoughts, " ... the seizures are what we have really been battling with. The hardest part is we don't always know she's having one, sometimes until after when she says 'mom, I can't see,' or 'mom, I can't walk because my legs won't work.'"
To donate to "Friends of Ava," checks may be made payable to Brian Gehrung/Friends of Ava and mailed to Bob and Gloria Jean Siegel-Howe, P.O. Box 125, Menomonee Falls, WI 53052-0125.
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