Navigating the healthcare system as an adult is already difficult as is, nevertheless as a teenager with a non-English speaking parent. But that became Genesis Soto’s reality when she got diagnosed with a blood clot disorder.
The diagnosis
In January 2025, when Genesis woke up with back pain and was struggling to breathe, she and her mom, Cessia, thought it might’ve just been because she slept wrong. But as days went by and her symptoms weren’t improving, a trip to the local emergency room in her hometown, Wilmar, Minnesota, led to the discovery of blood clots in Genesis’ lungs, shoulder, and neck, and a transfer to Children’s Minnesota.
After drawing labs, the cancer and blood disorders team at Children’s Minnesota was able to narrow down the cause of the blood clots to antiphospholipid antibody syndrome (APLAs), an autoimmune disease which causes the blood to clot easily in the arteries and veins.
During the week that Genesis was admitted at the hospital, she was put on oxygen and had to relearn how to walk. The blood clots made it hard for her to breathe, causing exercise intolerance: where her legs felt weak, and she couldn’t walk for long without her heart rate going up too high.
Ongoing care
Over the past two years, Genesis was admitted to Children’s Minnesota two more times for care: in February 2025 for internal head bleeding and March 2026 for difficulty with breathing and chest pain.
Although Genesis took blood thinners as prescribed to help prevent more blood clots, the clots she already had in her lung never fully went away. So, when she had continued breathing issues and imaging came back showing chronic clot impeding her lung function, the best care option was to surgically remove them.
While the surgery to remove the blood clots won’t be until later this year, Genesis’ condition and blood clots are being closely monitored with frequent appointments with Dr. Kate Garland, pediatric hematologist, and the rest of her care team consisting of a pharmacist, physical therapist, nurses and other advanced practice providers. Due to the various placements of Genesis’ blood clots, her care also involves other specialties that include cardiology, pulmonology, pediatric and adolescent gynecology, genetics and neuroscience.
Navigating the healthcare system as a teenager
On top of being hospitalized multiple times, Genesis’ care also involves multiple healthcare institutions and numerous appointments that are a four-hour roundtrip from her home to Children’s Minnesota and the Twin Cities. This means that she missed a lot of school and as her sole caregiver, Cessia has had to miss work often.
This eventually took a toll on the family financially. With the help of their clinical social worker, Betsy Boegeman, Genesis and Cessia were able to apply and receive financial assistance for the times Genesis was hospitalized through the Tanner’s Team Foundation and the Children’s Minnesota Cancer Kids Fund. The funds from both grants went towards helping the family with rent relief, parking, and meals for Cessia amidst the hospitalizations. Betsy also remains in ongoing communication with Cessia’s employer to advocate for the family.
“Without her I don’t know where we would’ve been, so I really want to thank her for that,” said Gensis about Betsy.
The stress from balancing school while navigating a new diagnosis and the healthcare system has caused Genesis to lose hair and a significant amount of weight. But she has remained resilient and continues to manage it all with strength and a remarkably positive attitude.
Looking ahead and reflecting on her care
Despite all that she has gone through the last couple of years, Genesis never stopped looking forward and planning for her future. After the surgery to remove the blood clots scheduled for this upcoming December, Genesis plans to graduate high school and go to college to pursue a career in pediatric healthcare.
As she looks back, Genesis feels grateful for the care and support she has received from her team at Children’s Minnesota. “I would really like to thank all my doctors and care team for helping me through this long journey, even when it’s been really hard,” said Genesis.
