Kova Jeffery Jemec was born March 31, 2020, with bilateral renal dysplasia due to a lower urinary tract obstruction. At two days old he had his first surgery to create an opening to help empty his bladder. Despite this surgery, his kidneys completely stopped working at 8 weeks old and he started daily dialysis. Kova spent the first 6.5 months of his life in the hospital. He went home at 6.5 months and did peritoneal dialysis at home nightly for 12 hours. Despite being on dialysis Kova did quite well at home for a year after his release from the hospital. However, dialysis is not a good long term solution for kids. Kids with end stage kidney disease have many complications including anemia, hypertension, trouble eating, fragile bones, and delayed growth.
Babies on dialysis have to get to 22 pounds to be eligible to get a kidney transplant. Kova hit that weight in August 2021 and started his work up for transplant. In February 2022, his first kidney transplant failed due to a clot. He spent 3 weeks in the hospital, got released for 2 days, and then his abdominal incision opened up and he had to have emergent surgery to close his abdomen. This led to another 3 week hospital stay. It was determined he can no longer do peritoneal dialysis at home due to the excess scar tissue in his abdomen. Currently Kova is doing hemodialysis 3 times a week at the hospital, which is approximately 90 minutes away. (We have no pediatric dialysis centers in Lakeland so we have to travel). We will be taking him to a larger, more experienced center for his next transplant- as recommended by his doctors. This center will be farther away, possibly out of state. We have a potential living donor willing to donate her kidney to Kova, but there will be many upcoming expenses. (One of Kova’s moms will be staying with him at the new transplant center, while the other stays and works. However, with only one income and two residences it will be costly.There will be travel expenses for our family and the living donor, as well.) We have partnered with the Children’s Organ Transplant Association (COTA) for assistance with transplant-related expenses. These donations can only be used for transplant-related expenses and are not taxable for our family (as some other fundraising sites). Donations to COTA for Kova of any amount would be greatly appreciated. Thank you for all your thoughts and prayers.
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.
Update on Kova:
Kova is currently 21 pounds! He has started growth hormone injections so that he can grow in length in addition to weight. Our next nephrology appointment will be August 5th. By that time he should be up to 10kg (22 pounds). I will be worked up as a potential donor first. Kova and I have the same blood type (B+) and we have to be at least a 3/6 match in the tissue typing. Hoping and praying we are more than 3! I realized most people do not know much about transplants, much less transplants in children. For instance, most people assume Kova would need a child’s kidney. Actually, most children get adult kidneys. Only one kidney needs to be transplanted- that is why living donors are able to donate. In most instances the native kidneys are left in, unless the surgeon decides it best to take one of his out to make more room for the new kidney. A kidney from a living donor will last approximately double the time that a deceased donor kidney will last (10 vs 20 years). This is why I really prefer to give Kova my kidney if possible. If I am unable to donate to Kova, he would need a kidney from someone with B or O blood type. The +/- does not matter in transplantation. We are researching transplant centers in order to make the best decision possible on which center to use for Kova. It is amazing that we are quickly approaching this day that I have basically been waiting on since Kova started dialysis at 8 weeks old. I appreciate all the donations, prayers, and well wishes. Our entire family is grateful to have such a wonderful group of friends and extended family!