14-month-old Avery Stromeyer fancies herself independent, mother Amanda noting her little girl believes she can do everything on her own. The child knows what she likes and what she doesn’t and loves to walk and talk in her own way all day long.
But life isn’t easy for Avery, in spite of what her big girl belief in herself would indicate. At just nine days old, she was diagnosed with cystic fibrosis. She has to take 900 pills each month to digest her food and to help her to gain weight, with other supplements and vitamins on top of that number. She makes visits to three doctors each month, and she’s garnered enough experience to know what those visits entail.
“When she sees the blue gowns, she freaks out,” Amanda said. “She knows what’s coming her way.”
Insurance pays only so much of the costs necessary for Avery’s medical care. That’s why family has stepped up to support the Luling girl. Krystal and Steven Maggard of Norco are raffling off two crawfish pirogues filled with items for boil season, including seasonings, Zapp’s chips, jambalaya and dirty rice mix and much more. Proceeds will go toward helping offset Avery’s medical fees. Krystal Maggard is the cousin of Stephen Stromeyer, Avery’s father and Amanda’s husband.
“I didn’t know what to say,” Amanda said when she heard the Maggards’ plans. “They’re close family, but I never expected this. We’ve had so much family support since Avery was born. It’s heartwarming.”
Avery was small when she was born at just five pounds, but her delivery was normal. In the days following her birth, however, Amanda and Stephen noticed Avery passed a bowel movement every time she drank from her bottle.
They began visiting a pediatrician in an effort to monitor her weight, but instead of gaining weight, she was losing it. On one of the family’s regular visits, they received the news of her diagnosis.
“They did her heel print and took blood like they would every baby … (the pediatrician) said she tested positive for cystic fibrosis. I’m a physician’s assistant and I knew exactly what that meant,” Amanda recalled. “My husband was like, ‘what the heck does this mean?’ It caught us completely off guard. We have no family history of it or anything like that.
“It was … kind of like a drop the mic and walk out the room type of thing. Avery was just nine days old.”
As Amanda had to keep herself composed, she was also tasked with explaining the situation to her husband.
“(Stephen) asked what does this mean? Is she dying right now?” Amanda said. “I had to explain it to him and try to not alarm him, which is tough in the moment. What do you say and what do you not say?”
Cystic fibrosis is a disease that affects the lungs and digestive system, and can create life-threatening complications. There is no known cure, though treatment can ease symptoms and reduce potential complications.
The good news is beyond the large deal of medication and care necessary for Avery’s digestion, thus far there have been no major, threatening health complications or other disabilities stemming from the disease.
And little Avery doesn’t care to let it stop her from living life.
“She’s very independent. She thinks she can do everything on her own, even before she was walking,” Amanda said. “She knows what she likes. She likes to watch Puppy Dog Pals on the Disney Channel. She knows what food she likes and she’s not afraid to slap your hand if she doesn’t like it. And she babbles away. I wish I knew what she was trying to tell us.”
She also loves to move around.
“She’s walking around constantly,” Amanda said. “My mom says she wants to put a pedometer on her to see how many steps she takes per day.”
But her difficulties still remain. The raffle is one gesture held in the name of Avery’s Army, a team raising funds for Avery’s care.
Two pirogues full of crawfish boil goodies will be raffled, with the drawing to be held on Feb. 29 at 2 p.m. Video of the ticket pull will be shared on social media. Each ticket is $5 and can be purchased by contacting Amanda Stromeyer at (504) 919-4106. Payments can also be made through Venmo or Paypal.
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