Avery Stromeyer was diagnosed with cystic fibrosis when she was just nine days old, but that isn’t something the now 6-year-old Luling girl ever lets stop her.
“It does not hold her back,” her mother Amanda said. “She’s doing dance competition this year. She runs without difficulty. She takes the lead with her friends … she’s very active.”
Amanda said that while the doctor visits are plentiful, all things considered Avery has been able to live a “rather uncomplicated life.” Part of the reason for that, Amanda said, has been the great strides that have been made in the medical community in cystic fibrosis research and treatment. A medication Avery has taken that was released in recent years, as well as other new medications that has been approved in that time span have contributed to what is a now a far better long-range outlook for patients
“That has been showing great strides as far as longevity goes for cystic fibrosis patients. When Avery was born, the average life expectancy (in her situation) was 35,” Amanda said. “Now it’s 55, and it’s because of all these medications, pouring money into this research. The foundation helps to fund this research and new therapies, and hopefully extend lives.”
And that’s why the Stromeyers continue to promote the cause. The second annual Avery’s Army Egg My Yard fundraiser is set for this month, with proceeds going to benefit the Cystic Fibrosis Foundation.
Those donating toward the fundraiser will have candy and trinket-filled eggs scattered throughout the front yard of their home on the night before Easter, setting the stage for a fun Easter egg hunt when children awaken. Amanda will be making these deliveries to Luling, Des Allemands, Norco, St. Rose, River Ridge, Harahan, Metairie and Kenner on April 19 after 7 p.m.
Those ordering should do so by April 13. Eighteen eggs is $20, 36 is $30, 52 is $40 and 72 is $55.
Avery has two copies of the most common mutation for cystic fibrosis – there are over 200 mutations that can cause it, and in the past, many rare mutations did not have medications targeted to their specific situation.
“Now, I think 90 percent with cystic fibrosis have a drug to take that helps them, and that goes back to the work (the Cystic Fibrosis Foundation) is doing,” said Amanda. “So, it’s not only helping Avery herself, but so many others.”
Avery was small when she was born at just five pounds, but her delivery was normal. In the days following Avery’s birth, however, Amanda and her husband Stephen noticed their daughter 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,” 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.”
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 Cystic Fibrosis Foundation holds the Great Strides Walk each year as a fundraiser for its ongoing work to find a cure. When the Stromeyers began participating in the walk, their team needed a name – Avery’s Army was born.
This year’s walk is on May 10 in New Orleans. Avery is the local ambassador for the Great Strides Walk this year.
“We’re doing the walk with capes and superhero masks for the theme this year, which is ‘Be the hero of your own story,’” Amanda said.
There will also be a “Princess Tea” fundraiser at the Ashton Plantation Clubhouse on April 13 from 2 p.m. to 4 p.m. with proceeds also going to the Cystic Fibrosis Foundation as well as Avery’s medical fund. Tickets include tea party, nail painting, make-up, hair updo and tiara, and crafting. Tickets are $40.
Those interested in supporting the cause through the Easter egg or tea party fundraiser may call Amanda Stromeyer at (504) 919-4106.
