I'm so grateful they didn't listen.
Each CF family has a different diagnosis story, and each is super powerful in its own way. Diagnosis with CF -- whether it comes at 6 weeks or 60 years -- is a powerful, life-changing event. And because 70% of CF patients are diagnosed before the age of 3 (a number significantly increased by newborn screening, which is now mandatory in all 50 states), it is most often the parents who feel the brunt of that initial diagnosis moment. I like to think that doctors are no longer telling parents that the best they can do is take their child home and wait for the inevitable, but that doesn't make it easy, and it doesn't make the stories any less an indelible part of each CF family's personal journey.
Today I'm thrilled to feature a Community Faces guest blog by Lisa Sankey and Chris Brungardt about their son Max. As always, CF parents (and their awesome kids) never cease to amaze me. Thanks, Lisa, for sharing your story!
Community Faces: Sounds from the Underground
Names: Lisa, Chris, and Max
Connection to CF: CF Superparents and son, Max
Age: Max is 9 years old with CF
From: N. Dakota
GS Team: Team Max Fargo
We didn’t have a clue that we were carriers of the CF gene. No family history, nada. After a normal pregnancy, our son Max was born. Later that day, he took his first airplane ride when he was life-flighted to Children’s Hospital in Minneapolis for a bowel obstruction due to meconium ileus. Seems the local pediatric surgeon was on vacation. We knew nothing about cystic fibrosis other than what we’d seen on an ER episode regarding lung transplants. Suddenly we were learning about bronchial drainage (bds) or beatments as we called them, nebulizers, enzymes…
Initially we were worried that he’d always be the sickly child. In and out of hospitals. Missing school, not have any friends or a normal life… We got into a routine with treatments, meds. He started daycare. We found a place which focused on exercise, outdoor activities year round. He thrived! We’ve enrolled him in different sporting programs ---- swimming, skating, tennis lessons, gymnastics, and baseball. He still hasn’t found his niche, but stays fairly active.
Knock on wood… We’ve been quite fortunate with his health. A few colds, sinus issues, exacerbations requiring oral antibiotics…. We attribute it to maintaining a consistent regimen – chest physiotherapy via the vest 3 times a day and medications made possible through efforts by the CFF. And vigilance… We do realize things can easily change for the worse. He’s had one hospitalization since his original NICU stay which occurred a few years ago and was due to a bowel obstruction cause by adhesions from his surgery as an infant. Today he’s an active, happy 3rd grader. He’ll be 10 years old in June. His mutation is Homozygous Delta F508.
Our Great Strides name is Team Max Fargo. We also participate in the Fargo Brewers Ball for Cystic Fibrosis, which will be on October 4th.
Here’s this year’s video we put together for this year’s CF walk.