Bodie was born with Hypoplastic Left Heart Syndrome (HLHS). This means he was missing all of the structures on the left side of his heart – he essentially was born with only half a heart! In addition to the structural defect of HLHS, Bodie also was born with Catecholaminergic polymorphic ventricular tachycardia (CPVT), an inherited cardiac condition that causes sudden arrhythmias in response to adrenaline. The combination of these two defects is so rare (less than 1 in 50 million) that his doctors had never seen it before! Unfortunately, the combination of defects has also made treatment extremely difficult.
Before Bodie was born, we were told that he would need at least 3 open-heart surgeries to survive, and would require a heart transplant one day. Always an overachiever, Bodie had the expected 3 surgeries (the Norwood, at 5 days old, the Glenn at 7 months old and the Fontan at 3 1/2 years old) as well as several “bonus” surgeries (a pacemaker placement at 2 months old, pacemaker replacements at 3 1/2 years old and 13 years old, and a Sympathectomy surgery at 7 years old). Needless to say, Bodie is no stranger to hospitals and medical intervention!
Yet despite it all, Bodie was thriving – going to school, riding horses, active in youth group, playing video games with friends, and living the life of a typical 14-year-old boy. He graduated from 8th grade on May 29, 2024!
On June 3, 2024, he suddenly and unexpectedly went into heart failure. We traveled from San Diego to Lucille Packard Children’s Hospital at Stanford in Northern California for what we had expected to be routine cardiology appointments. However, he was quickly admitted through the ER to the Cardiovascular ICU, and placed on Ecmo (life support) within days. He was on Ecmo for 6 days, during which time he was evaluated for heart transplant and listed for a heart. 16 hours after being placed on the heart transplant list, we received a call that they already had a heart for him!
He received his new gift of life on June 14, 2024, and has been recovering at LPCH ever since. He is recovering well, but has a long road ahead of him to gain his physical strength back as well as his vocal cords, which may have been damaged during his transplant surgery. Once he is discharged from the hospital, we will be required to remain up in Northern California for at least 2 months, during which time he will have many more appointments, lab draws and procedures to ensure he is not rejecting his new heart. (Rejection of organs is at the highest risk during the first 3-6 months post-transplant.)
Amy (mom) is staying up in Northern California with Bodie, while Dusk (dad) and Sierra (17-year-old sister) are back home in San Diego, working and holding down the homestead, which includes 36 chickens, 3 ducks, 4 cats, 2 dogs, a bunny, a turtle and a fish.
We’re now facing several challenges – being separated as a family while Bodie recovers, the uncertainty of future admissions with Bodie, and now a big financial burden too. The cost of a transplant can be upwards of a million dollars. We’re very blessed that our insurance covers a lot of it, but our out-of-pocket costs will likely be close to $60K, if not more. In addition to the medical costs, we’re incurring the cost of having our family living between two different locations, as well as the costs to fly and drive back and forth. Additionally, both Dusk and Amy are self-employed, which means when one or both are at the hospital with Bodie, we’re losing income necessary to pay our bills! Because of this, we have partnered with the Children’s Organ Transplant Association (COTA) for assistance with transplant-related expenses. Please consider making a donation to COTA in Bodie’s honor – anything helps!
Finally, and most importantly, we want to thank so many of you who have kept Bodie and our family in your thoughts and prayers as they are what strengthens us spiritually and mentally! We know prayers are why Bodie has received his heart so quickly, why he was at Stanford at the exact right time, and why he is still here with us. PLEASE keep the prayers coming!
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.