So many face unfathomable odds and devastating prognoses, which they approach with a positive attitude and grace that leaves us in awe.
It makes you think about how you would react if you or a loved one faced similar circumstances. We read their stories with a lump in our throat and tears welling up in our eyes, but it’s still hard to fully grasp the experience.
What would you do if you were told you had a chronic, life-limiting condition with no known cure? What would you do as a kid, teen, or young adult hearing that news? It’s impossible to know until you’ve walked a mile in those shoes.
As Andrew (Drew) and his family are discovering, the path forward doesn’t always stop at acceptance. What would you do if you spent your whole life accepting your condition - shortened life expectancy and all - only to be told you might have more time than you thought?
Drew was diagnosed with Cystic Fibrosis (CF) as a newborn baby. Cystic fibrosis is a progressive, inherited condition that affects the lungs, pancreas, and other organs. It causes fluids to become thick and sticky, plugging up tubes, ducts, and passageways. Symptoms vary, but most experience a persistent cough, repeated lung infections, and inability to gain weight.
“It makes everything in the body sluggish,” explained Drew’s mom, Dee Dee. “But other than the cough, it can feel like a hidden disease. So many CF kids seem completely ‘normal,’ and it’s hard to understand what they constantly deal with.”
She can speak from experience because it’s not just her son Andrew who deals with it – her daughter Kristi does, too.
When Drew was diagnosed shortly after birth, it was like a light bulb went off in Dee Dee’s mind. Kristi was relatively healthy for a two-year-old girl but experienced a persistent cough and some ongoing GI issues. They were on the way to see an allergy specialist to help determine what was causing her challenges when Dee Dee went into labor with Drew. They never made it to that appointment.
Once doctors diagnosed his CF and explained the characteristics, Dee Dee realized a lot of what they were saying matched up with Kristi, too. Both kids were officially diagnosed with cystic fibrosis in 2003.
“It was surreal,” Dee Dee said. “Just the thought that they might not get the full life you would expect your children to have. The prognosis for CF at that time was age 34 – and I was 36 myself then.”
As he got older and understood more about his condition, Drew had a hard time thinking about his future.
Going to college, getting a job, saving for retirement…if Drew accepted a shortened life expectancy, how was he supposed to plan for the future?
Drew is a great kid. He’s quiet and reserved, but once you get to know him, he’s incredibly kind and polite. He’s often described as a true empath and could never understand how people could be mean to each other.
He’s also an exceptionally compliant patient and willing to try new medical treatments or suggestions. So when a new CF medication went to clinical trials, Drew was recommended to be in the test group.
He was placed into a four-year trial for a medication poised to revolutionize what it meant to have CF. Unbeknownst to him, he had the placebo version during the trial, but after the FDA cleared the medication, Drew was one of the first to receive it. And because his big sister Kristi has the same genetic mutation, she qualified, too. It’s called Trikafta.
“It changed a lot of things for kids with CF,” Dee Dee explained. “The average life expectancy before was late 30s. Now, with this medication, many patients could enjoy near-normal lifespans.”
“It’s been a huge help for my kids,” she continued. “It hasn’t really impacted their digestion issues but has led to a decrease in lung infections.
“With CF, there’s a persistent cough, so much so that I used to be able to find my kids in the store because I could hear them coughing,” Dee Dee told us. “Once they started taking this medication, I couldn’t find them in the store anymore.”
Drew and Kristi got a new lease on life, and it’s been a beautiful thing. And while they continue to celebrate the positives of that news, of which there are so many, it has brought some unexpected challenges, like what that means for their futures.
“Drew had accepted that he was likely going to die in his 30s,” said Dee Dee. “So now he kind of feels like, ‘Now what?’”
As with most things, there are some downsides. Trikafta is prohibitively expensive, and with all of his combined medications and treatments, you’re looking at upwards of $350,000 each year. Fortunately, Drew's insurance and grants cover the cost at this time. If that will continue, no one can say.
Kristi and Drew must also remain critically aware of their environment, limiting dust, smoke, or mold exposure. So when Dee Dee found out their home’s crawlspace and HVAC system were contaminated with mold, she knew this was more than an inconvenience – it was a life or death situation.
Dee Dee juggles the enormous cost of caring for two children with cystic fibrosis, and adding $30,000 in mold remediation just wasn’t in her budget.
Through the support of our monthly subscribers and one-time donors, we fully funded the cost of mold remediation and HVAC replacement for a total impact of $30,523.
Though Kristi is currently in college, when she comes home for a visit, her health declines, and more often than not, she becomes ill with respiratory issues.
“We are fearful the mold may be exacerbating their health, and it’s extra critical to have it removed,” Dee Dee shared. “It’s beyond life-threatening.”
When we shared the news that Chive Charities would be able to support their need, Dee Dee was at a loss for words.
“It’s so hard to ask for help - to ask for stuff,” she told us. “It’s very humbling. We’ve never had a lot of money to give, but I have had time. I’ve tried to volunteer or give back to my community to spread that kindness around, but it’s still so hard to be on the receiving end.”
For a family that’s been through so much, a healthy home should be a given. With a new lease on life and more opportunity in front of him, it’s the first step in a brighter future for Drew…whatever he wants that to be.
The good news is that now he has the chance to find out.
Right now, there are so many others hoping for a better future. You’ve made that possible for over 600 of them and counting. What do you say about adding some more? DONATE HERE.