Our journey began well before we even knew we were on it. Dean was born with bilateral dysplastic kidneys, but it was missed during my many high-risk prenatal scans. Born at just 35 weeks, Dean’s health drastically declined over the first few weeks of life and we had no idea why. At only 3 weeks of age we took him to the emergency department where he was immediately stabilized due to fatally high lab results and severe dehydration. Dean was then life-support transferred to PICU at CHOC and that was where we were given his life-changing diagnosis. Dean was diagnosed with stage 4 acute/chronic kidney disease, and we had no idea what life would have in store for us from that day forward.
Over the course of the next year, Dean’s health continued to decline rapidly. This resulted in many long hospital admissions. He spent over 50% of his first year of his life inside of a hospital, with myself (mom) and my husband (dad) right there with him.
By the age of 7 months old, we were told that Dean no longer had a left kidney and that his right kidney was functioning at less than 10%. At that point we were told that Dean would soon require the support of dialysis until he was able to be placed on a transplant list. This was when our team at Kaiser referred us over to our amazing team at UCLA Children’s hospital.
At 8 months old, Dean had a broviac line and peritoneal dialysis catheter placed as he was ready to begin at-home dialysis. Shortly after his surgery I spent over 18 hours being meticulously trained to administer at-home dialysis and care for Dean as his primary caregiver.
As we’ve endured our emotionally and physically draining dialysis journey, we have been encouraged by Dean’s UCLA team that once he grew to about 10kg he would be considered as a kidney transplant recipient. By 12 months old, Dean finally met his weight and growth requirements to be referred to UCLA’s transplant clinic and were told to expect his surgery to take place within 2-3 months.
Dean is now 13 months of age and we are jumping through all the necessary hoops to get him cleared for his life-saving surgery. We are also currently waiting to see if my husband or any other friend/family member will be a living donor match for Dean.
We have been so gratefully referred to COTA by our amazing social worker at UCLA and cannot thank her enough. Getting to know and becoming a part of the COTA family has been such a blessing and we are so appreciative of the immediate support and love that they have shown us.
We are raising funds for COTA in honor of Dean to help with transplant-related expenses. Our medical insurance thankfully covers the biggest portion of the transplant/donor costs, however, there is still a lot that insurance will not cover. Just to name a few, the insurance deductibles, copays, individual annual out-of-pocket max, prescriptions, at-home medical supplies/device rentals, and medicated formulas are all adding up quickly. Not only that but traveling 100+ miles to his post-transplant UCLA appointments (multiple times a week) will become a great monthly expense for us. We will also need assistance with the necessary travel and lodging costs of the living donor if my husband does not match.
We are so honored and thankful to have COTA as an available resource for our family to utilize, as all proceeds and funds raised in honor of Dean will be tax-deductible to the fullest extent of the law for our donors. COTA will also stand ready to assist Dean with transplant related expenses throughout his life. This is so comforting for us as his parents because unfortunately, Dean will need multiple kidney transplants during the course of his lifetime. Unbeknownst to us until recently, a donated kidney from a living donor only lasts approximately 15-20 years. This is due to the very essential immunosuppressants he will be placed on post-transplant to prevent organ rejection, but unfortunately this medication also greatly injures the kidneys.
We are so greatly appreciative of any and all donations made towards COTA for Deans Fight. We would also love it if you could pass along Dean’s story. Thanks for stopping by our page and rallying around our little fighter!
Love,
Dean’s Family
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.