It has been a difficult road for Ava Becher in her first few months of life.
The infant daughter of Liz and Tim Becher of NYA was diagnosed with a severe form of Osteogenesis Imperfecta, also known as Brittle Bone Disease, shortly after her birth in July, and has already suffered multiple leg and arm fractures as a result of seemingly harmless occurrences.
Since Ava’s story was first shared with the community in September, for example, she has sustained an additional broken arm while taking a nap in her crib, and she broke a femur bone in her leg on Halloween after simply kicking into a blanket at bedtime.
Area residents have an opportunity to show support for the Becher family and help with medical expenses for Ava this Saturday, Nov. 17 when a benefit, titled “Ava’s Unbreakable Spirit,” is held at the NYA Pavilion from 5 to 10 p.m. The benefit includes a chili feed, silent auction, raffle and kids’ activities.
While bone fractures have continued to occur for Ava, the family also had good news to share in the week prior to the benefit. Medical treatments with a drug called pamidronate that will help to strengthen Ava’s bones by up to 30 percent have begun, and a pediatrician in Omaha, Neb. gave Tim and Liz hope that Ava’s condition may not be quite as dire as originally predicted when the Bechers visited in late September.
“It was actually really encouraging because the doctors in Minneapolis felt like Ava was extremely, extremely severe, which she is. She breaks easy. But compared to the hundreds of the kids they see in Omaha, they thought they would classify her more in the moderate side and were hopeful that she might have a chance at walking,” said Liz. “It was really early to say at only two months old, but they see so many kids. They’re the ones who could really make that educated assumption.”
After Ava sustained a broken arm while medical personnel were inserting an IV for her first bone-strengthening treatment, she underwent surgery to have a central line implanted to avoid similar situations in the future. She has now completed her first treatment at Children’s Hospital, and a second treatment session was planned for this past Monday at the Becher’s home.
“The second one should help, and by the time she has the third one I would hope we’d start to see a slowdown in the breaks,” said Liz. “Her first one was actually half a dose. They do that because they don’t want to shock her system.”
The pamidronate treatments will occur at eight-week intervals. Liz explained that treatment sessions go for three consecutive days, with Ava on an IV for four hours each day. Her initial reaction to the medication has been positive.
“They told us to expect flu-like symptoms with her first one, but she actually did really well and we didn’t notice any major side effects, so that was really awesome,” said Liz.
The Bechers will return to Omaha on March 14 and Ava will undergo a full exam from multiple specialists.
“With their assessment they can help guide her care here in Minneapolis just because they’re so much more educated on it and see it so much more frequently. They’ll really work with her doctors here locally to make sure we’re on the right track,” said Liz.
In the final week before the benefit, Liz said that preparation for the event has gone well and the family is hoping for a strong turnout.
“The local businesses, and even people who aren’t business owners in the local community — everyone has been so generous with their donations and contributions for silent auction items. It’s been great,” she said.
The silent auction will include a wide variety of attractions, including a weeklong condo stay in Fort Meyers Beach, Fl., a weekend pheasant hunt in South Dakota, a stainless steel grill valued at $900, lots of sports tickets, memorabilia and autographed items, and multiple other getaway or hotel stays.
“If people are planning a vacation they can probably get it a lot cheaper than going through some travel service,” said Liz.
And all proceeds will go to help a four-month old infant and her family on the long road ahead.
“With everything she’s going through she’s still in really good spirits and happy,” said Liz. “All around, she is a great baby considering the things she has to deal with.”