Echo’s story began with an ultrasound at around 5 months in utero when our gynecologist noticed a possible issue with Echo’s kidneys during an ultrasound. We spent the next 3 months monitoring with a specialist in Tallahassee to see if the problem would resolve itself. They noticed that the urine was being retained in the bladder and not replenishing the amniotic fluid as needed. Echo was born 1 month early due to lack of amniotic fluid in Tallahassee. He stayed at TMH for the next 2 days in NICU as we waited patiently for the doctors to give us an answer on what was wrong with Echo. The doctors came and we were told we would need to be prepared to head to either Jacksonville or Gainesville. He would be transferred to either one of the children’s hospitals to be cared for and diagnosed.
Our Wolfson’s journey began when he needed a helicopter ride from Tallahassee to Jacksonville in October of 2021. We spent the next 4 weeks in the NICU patiently waiting on Echo to grow and understand what his diagnosis was. Echo was born with 2 kidneys that had been damaged in utero due to reflux. His kidneys also had cysts that formed in them, as well. His kidney function was very low, and we were able to medicate him and feed him a low potassium/phosphorus formula for the next few months. In March of 2022, it was determined that Echo had been diagnosed with ESRD, which would need him to start dialysis. The problem was that he was so small that we weren’t sure if he could handle peritoneal dialysis over hemodialysis. We live over 3 hours away from Wolfson’s and hemodialysis didn’t seem like an option for us. Thankfully, Wolfson’s has a very skilled and knowledgeable Dialysis unit, especially Donna and Novandria. They have become like family to us and Echo. Echo has been on dialysis for almost 2 years now, but with the dedicated help from our dialysis team from Wolfson’s and our nephrologist from UF health, Echo is on track to get a kidney transplant sometime in the next 4-5 months. We can’t thank Wolfson’s Children’s Hospital enough for giving us and our child hope for a better healthier future.
Once Echo reached the minimum of 10kg or 22lbs in weight, then he would be eligible for Kidney transplant. This is when our CHOA journey began. We drove to CHOA of Egleston to see the transplant team and get worked up. We have met with several of the doctors, staff, and coordinators and have had multiple appointments to determine the best course of action and finding a match for Echo. We have chosen the live donor route because the transplant team believes Echo would be a prime candidate for that and it would give him many more years without having to have another transplant. We plan on having his transplant done this summer so that we have some time to prepare, since we will have to live in the Atlanta area for the next 2 1/2 months.
Echo is a very happy and strong child, who has 2 brothers and a sister who adore him and play with him as much as possible. He loves eating ice and playing outside. He has no fear when it comes to play time. Echo loves his siblings and his grandparents. When any of them are present he always gives a big smile and comes running. He also expects to go with whoever shows up as well, whether it be us, my parents or the in-laws. We have had amazing support from family, friends, neighbors and even strangers over the last 2 1/2 years. Thank you all for your continued support with prayers and donations to COTA for Echos Journey.
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.