COTA for Layla's Journey

Our Story

Layla was born with a genetic condition called Alpha 1 antitrypsin deficiency. At birth, they knew her liver was being damaged and by 9 months old, she was diagnosed with cirrhosis and portal hypertension. Doctors told them that a transplant was inevitable because her disease was progressive. Even though Layla’s path was certain, she remained stable for many years while her body compensated for the disease that was slowly damaging her little body.

Layla has been closely monitored her whole life. Her latest tests showed that her heart and lungs are now also being affected from a secondary condition of her cirrhosis called Hepatopulmonary Syndrome. This condition can have rapid and unpredictable progression that can permanently damage her organs or cause death. She’s also developing varices in her esophagus that can cause a life-threatening bleed. Her doctors have decided that it’s time to intervene in order to keep Layla from declining. The healthier a child is before transplant, the better transplant will go; the sicker a child is, the more complications can arise. Her doctors have suggested, and we agree, that if a living donor is possible, that’s the best route for Layla. Unfortunately, the pediatric wait-list for a liver can be long, so we’re remaining hopefully that we can find a match.

Layla starts her journey to transplant with her evaluation that begins March 14/15. This is where the Anderson family will need help. Idaho doesn’t have a transplant hospital and all appointments will be out-of-state. It’s expected that they will be living in SLC Utah for at least 2-3 months during transplant. They will also be financially supporting all of Layla’s living donor costs towards travel and lodging during their surgery as well, as they also will have to remain near the hospital post-transplant. What many don’t realize is that transplant is not a cure, it is a treatment. One that is very closely monitored for complications, rejection and side effects. This will be lifelong for Layla. Countless out-of-state trips to SLC for monitoring, tests and procedures. Layla’s parents are incredibly lucky to have state Medicaid as their secondary insurance and will hopefully not have medical copays. But the travel and lodging costs will be enormous and ongoing. Not to mention the lost wages from Joey during that time they spend in the hospital.  

Here’s where COTA and your support comes in. The Children’s Organ Transplant Association is a nonprofit that financially supports children and families through their transplant journey. COTA funds will always be available to Layla for transplant related costs – even as a young woman. Remember, this is not one surgery, this is a lifetime journey of keeping her healthy and preventing rejection.  Your donations to COTA for Laylas Journey will assist with a lifetime of transplant-related expenses.

Layla is such a special child. Truly, to know her is to love her. The Andersons are eager to have this behind them, so Layla can heal from the medical and emotional trauma and begin her new life, healthier and stronger than ever before. Your support of COTA for Laylas Journey and your love during this journey mean the world to them.

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. #Layastransplantjourney