Hello, everyone,

I want to share a story with you, one that’s been unfolding for as long as I can remember. It’s about my sister, Dara—my strong, incredible sister who has faced more than most of us will in a lifetime, yet remains hopeful, resilient, and full of love.

Right now, she’s facing another battle, but to understand where we are today, I need to tell you where we’ve been.

Dara came into this world as a healthy, beautiful 8-pound baby. I wasn’t around just yet, but from what I’m told, she had some fussy moments (a bit of colic, Mom would say), but nothing out of the ordinary. When I finally joined the family a couple of years later, everything seemed fine. It wasn’t until Dara was 4 that things began to change.

She started having trouble breathing. My mom, always attentive, took her to doctor after doctor, but they dismissed her concerns. “She’s fine,” they’d say, brushing off my mom’s instincts. But my mom knew something was wrong—she could see it, feel it every time she watched Dara sleep, struggling for breath. She didn’t give up. After pushing for answers and seeing countless doctors, we finally found one who listened. Dr. Herman. That’s when Dara was diagnosed with laryngeal papillomatosis—a rare condition that causes tumors to grow in the airway.

At just 4 years old, Dara had her first of many surgeries—81 to be exact—and that number continues to grow. These surgeries have been our reality for years. At first, they were happening almost weekly, then monthly, and now, while they’ve spaced out more, they’re still a constant part of her life.

Mom did everything she could to make sure Dara had what she needed to survive. In a time before Google, support groups, or blogs, it was just our family, a few library books, and this doctor who believed in Dara’s fight. Mom even learned sign language, just in case Dara couldn’t speak after surgeries. She changed her entire career path, only accepting jobs that provided the best medical insurance because she knew Dara’s life depended on it.

I’ve watched Dara face pain like no one else. I’ve seen her have a camera shoved down her nose into her throat without flinching, needles poked into her arm without a second thought. When she says her pain is a 5, just know that for anyone else, that would be a 9 or a 10. But that’s just her—she’s built a tolerance for things no one should ever have to.

Now, Dara is expecting her first child—a moment she’s dreamed of, but one that also comes with serious risks. Her doctors warned us that the hormones from pregnancy could cause her papillomas to grow more rapidly. And recently, that fear became reality. Dara had a planned surgery but didn’t make it in time, and her airway was closing too fast. She had to undergo emergency surgery, where they inserted a trach to keep her breathing. I have NEVER seen an ER move so fast! While the trach has since been removed, she now has a stent in her airway, and we don’t know if it will need to stay throughout her pregnancy.

Right now, the plan is to keep the stent in place and closely monitor the growth of the papillomas. If they continue to grow rapidly, the stent will remain, and the doctors will need to insert a trach again to perform surgeries throughout her pregnancy. The trach allows them to operate quickly and safely, minimizing the time Dara is under anesthesia to protect the baby. However, if the growth slows down, there’s hope she can have the stent removed and schedule a surgery after delivery, like she’s more accustomed to.

So far, she has received over $5,000 in medical bills, and the total continues to rise. We still don’t know the full cost from her recent emergency surgery, and with the rest of her pregnancy ahead, there will undoubtedly be more expenses. Currently, she has another surgery scheduled for September 18th.

I’m asking for $15,000—enough to cover what she owes now and help ease the burden of future surgeries, medical equipment, and doctor’s visits.

Dara has never asked for help. She’s always worked hard, along with my mom, making sure they only took jobs with good insurance to cover these life-saving procedures. But as her sister, I want to see her enjoy this moment of becoming a mother without worrying about the weight of these bills.

Thank you from the bottom of my heart for reading her story, for caring, and for helping in any way you can. Your support means more than I can ever express.

With love and gratitude,

Ayla

** 9/19/24 Update **

Dara had an in-office procedure on Wednesday, which was intended to replace her usual hospital surgeries to avoid using anesthesia that might affect the baby. This was her first experience with the laser procedure in the office. The goal was to manage the papillomas with monthly treatments (using only local anesthesia) to allow for the removal of the stent a few weeks before the baby’s arrival. Unfortunately, the procedure didn’t go as planned.

Because the papillomas are lumpy, the lidocaine didn’t distribute effectively, causing Dara significant pain during the laser treatment (she compared it to getting a tattoo inside her throat). Despite administering the maximum safe amount of lidocaine, the pain persisted, leading to gagging and vomiting. The doctor then switched to a nerve block to numb both sides of her neck, but this didn’t fully alleviate the discomfort.

The new plan is to keep the stent in place until after delivery, which was not Dara's preferred outcome. The papillomas have already spread to her nose—something that has never happened before. More significantly, the real risk is that the papillomas could spread to her lungs, where they have the potential to become cancerous. The doctors recommend letting the papillomas grow and block her airway while she breathes through the stent, to avoid any further surgeries until after the baby is born.

Dara is currently in her second trimester and faces the difficult decision between risking the baby’s safety with surgery or letting the papillomas grow and potentially spread further. She has an appointment with a specialist in Atlanta on November 5th to get a second opinion. However, flying to Atlanta for this consultation will considerably increase her financial burden, adding to the existing stress of her medical situation.