The Story of Harley Reyes’ Journey

After a long, wonderful day at the Ostrich festival, Harley woke up at 3 in the morning, saying it was hard to breathe and that her chest hurts. She was rushed her to Banner Ironwood Hospital in San Tan Valley. 

After her preliminary testing, the emergency room doctors said her heart cavity was full of fluid, which was causing an irregular heartbeat and fluid to back up in her heart. At this point the doctors knew she was in critical condition and rushed to her Phoenix Children’s hospital, where she was admitted. This began the process of endless testing and the removal of the fluid from her heart cavity and lungs. At this point, she was now in need of a blood transfusion and iron infusion.

Doctors suspected Lupus, but it wasn’t until March 12th around 10 in the morning, when it was confirmed. After a kidney biopsy, we were told she had only 10% kidney function. The news was terrifying. We made the decision to have an emergency catheter surgically implanted so she could begin dialysis on a weekly basis. 

Harley’s Journey at this time: She is receiving dialysis 3 days a week for 3.5 hours a day.  Her dialysis has brought her heart back to functioning normally, however; her lupus destroyed her kidneys.  The damage to her kidneys is beyond repair and she is now requiring a kidney transplant. In August, Harley was given the option to be put on the transplant list. However; the option for being put on a transplant list requires testing. On October 17th, she will have an echocardiogram which will determine if she will qualify to be put on the live donor or open recipient list. 

Dad’s personal note: I want you to know that our children should NOT have to suffer and go through any pain. God forbid, we are NOT supposed to bury our kids. It has been a roller coaster of emotions, but my daughter has kept me focused with her wisdom and strength. Thank you all, family and friends, for all your love and support. We appreciate the services from COTA. Everything you have done and all of your continued support is greatly appreciated. We are continuing to accept donations to COTA in honor of Team Harley for a lifetime of transplant-related expenses as she continues to stay strong and battle through this trying time. With love, Chris Saby

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.