COTA for Team Jake

Our Story

You know those kids where everything just comes easy to them? Well that is Jake…smart, athletic, a leader and friend to all. Little kids, peers and adults all love him. There is just something special about him. Jake is also in kidney failure and preparing for a transplant. Most people are shocked to learn that Jake’s kidneys are barely working, as he outwardly does not show symptoms. However, that is far from the case. Jake takes 25 pills and 2 shots daily to preserve what little kidney function he has. Some of the challenges he has had to endure include high blood pressure, anemia, growth deficiency, and a highly restrictive diet. The doctor appointments and clinic visits are becoming more frequent, which includes monthly lab draws. The physical and emotional burden is a lot for a 13-year-old boy, but Jake makes it look easy. Despite his increasing fatigue, he still plays soccer and football and gets straight A’s in 7th grade. He loves going to youth group and helping coach his little brother’s soccer team. He amazes us every day.

Jake’s story starts in 2016 at the Children’s Mercy Emergency Department. Jake came down with a stomach bug over the weekend. By Sunday night, we decided it was time to get him looked at. The doctor we saw wanted to run labs to make sure Jake wasn’t dehydrated. His lab results showed a significant decline in kidney function and an ultrasound confirmed his kidneys were both scarred and damaged. After being admitted for three nights, Jake was diagnosed with Chronic Kidney Disease Stage 3 due to Renal Dysplasia and we learned that someday he would need a kidney transplant. Our entire world changed in an instant. To learn that your active and healthy 3-year-old was going to live with a very challenging chronic illness for the rest of their life, was hard for us to truly grasp in that moment. We didn’t know what the future would look like for him and we were scared.

10 years later brings us to today and Jake is getting very close to needing his transplant. He currently has 15% kidney function and his transplant team said at 10% we would have to move forward with treatment. There are two treatments for kidney failure, dialysis or transplant. These treatments are not a cure for Chronic Kidney Disease. Jake will need multiple transplants in his lifetime. A transplanted kidney has an average lifespan of 12-18 years. He will also be on immunosuppressant medication for the rest of his life. Hopefully science will continue to evolve and further treatments will become a possibility for him. Jake is currently active on the UNOS kidney donation list. We (Shelley and Michael) have also been approved to be living donors for him. We do not have a surgery planned because we are trying to keep his native kidneys as long as possible. We anticipate that transplant will be in 2026.

Throughout our journey, friends and family have asked how they can help, and we really did not have an answer. We recently learned about the Children’s Organ Transplant Association (COTA), which is a non-profit organization dedicated to helping children who need a life-saving transplant by providing fundraising assistance and family support. COTA’s services are free to our family, and gifts to COTA are tax deductible to the fullest extent of the law. The unique part of COTA is that 100% of each donation to COTA for Team Jake will be available for transplant-related expenses throughout his life, even as an adult. The unfortunate truth is that his health will always be a struggle. The burden of medical bills, medications, and transplants will never go away. Our goal is to create a COTA nest egg dedicated for future transplant-related expenses, so that Jake can focus on his health

Asking for help is hard. We did not come to this decision lightly. When we realized this could positively impact Jake’s quality of life now and in the future, the choice became much easier.

Thank you to our village who have been with us along the way. We appreciate your love and support more than you know. For those of you that want to help through this trying time, please consider a gift to COTA – ‘Children’s Organ Transplant Association’ in honor of Jake.  Your gift will assist with a lifetime of transplant-related expenses. Every donation, share and prayer means the world to us. Thank you for reading our story. We will post updates, along with fundraisers and events, on this page as we move toward transplant.

With love,
The Hannas
Michael and Shelley
Mikey, Jake, Ben and Joey