.jpg)
When Amanda Suchadoll talks about her 5-year-old daughter, Cami, she doesn’t begin with diagnoses, surgeries or hospital stays.
She begins with farm animals.
“Cami is currently in love with toys that light up and make farm animal sounds,” Amanda said. “She also loves listening to other kids playing and laughing.”
Those simple joys are hard-earned.
Since birth, Cami has faced more medical challenges than most people experience in a lifetime. A missed diagnosis of a congenital heart defect led to a series of discoveries, including chromosomal abnormalities that changed the course of her earliest days.
After months in the hospital, multiple life-threatening emergencies and open-heart surgery, Cami came home with a tracheostomy and ventilator while battling pulmonary hypertension.
Today, she is trach-free, her pulmonary hypertension has resolved, and she continues making meaningful progress through therapy.
“She is so much more than her diagnoses,” Amanda said. “The medical challenges, doctors appointments, hospital stays, therapies and surgeries have become part of our daily life, but they don’t define who she is.”
Every day is carefully planned.
For the Suchadoll family, every day begins long before sunrise.
Amanda and her husband wake between 4:30 and 5 a.m. to prepare for the day ahead. While Cami’s father bathes her, Amanda washes feeding supplies, prepares medications, and mixes her meals.
Because Cami is fed exclusively through a gastronomy tube, every meal, snack and medication follows a carefully planned schedule.
She receives meals at 6 a.m., 2 p.m., and 8 p.m., with snacks and water between feedings. Therapy, doctor’s appointments and time in her mobile stander are woven into the family’s weekly routine, alongside Amanda’s full-time job.
“I’m grateful I’m able to bring her to work with me,” Amanda said. “But it definitely has its challenges.”
On Wednesdays, Cami attends physical, occupational and feeding therapy at Beyond Therapy in Schulenburg.
Every milestone is celebrated.
“Our journey has never been about searching for a miracle or trying to change who Cami is,” Amanda said. “It’s about making sure she has every opportunity to reach her fullest potential and experience life as fully as she can.”
A chance for more Recently, Cami’s family learned about a new treatment option now available in the United States through NeuroSolutions.
The clinic is recommending a combination of VSEL therapy, extracellular vesicle therapy, Dezawa MUSE stem cells, and a three-week intensive rehabilitation program in Austin.
The treatments are designed to support the brain’s ability to build new pathways for communication, coordination, and connection.
Amanda is careful to temper expectations.
“This treatment is not a cure,” she said. “It’s a chance to support Cami’s brain and body in building new pathways.”
Because the treatments are considered experimental, they are not covered by insurance.
The estimated cost is $67,365, not including lodging and travel expenses during the three-week stay in Austin.
To help offset those expenses, the family launched Cami’s Courage Crew, an online fundraising campaign in December.
Hope shared
Amanda says her family isn’t looking for sympathy.
Instead, she hopes Cami’s story reminds others not to underestimate children with disabilities.
“If our story leaves people with one message, I hope it’s this: never underestimate what a child with disabilities is capable of and never underestimate the impact a community can have when it comes together to support a family,” she said. “Cami’s journey has shown us that hope grows strongest when it’s shared.”
For those who wish to support Cami’s treatment journey, donations may be made through the family’s Cami’s Courage Crew fundraising page at https://www.supportnow. org/cami-s-courage-crew or directly to the family.
