May 1, 2023 — May is a month full of family and fun, especially on the second weekend when families gather to celebrate moms. May has always been an important month for the Kloft family of Mt. Angel, Oregon — there is lots of farming to be done, young livestock to be cared for, and their customers are ready for grilling season, which means that every Saturday the Klofts get up before dawn to get to the Beaverton Farmers Market to see customers and friends and sell their Lonely Lane Farms pasture-raised beef, pork, lamb, and goat, raised in Oregon’s Willamette River Valley. In May, they will also most definitely take time to celebrate Mother’s Day and the three-year anniversary of learning their son, John, needed a new kidney that would eventually come from his mom.
Patty and Mike Kloft were thrilled to learn in 2012 they were pregnant. Their son, John, arrived in January 2013 and the family started navigating raising an infant while raising livestock and maintaining their family farm. The first six years of John’s life were relatively uneventful. He grew up loving life on the farm, and embracing all of the nuances of living life outdoors while learning how to care for the animals and the land. In May 2020, however, this family received unexpected news. John was seven years old at the time; he had started having pains in his side. Patty and Mike took him to see his physician assistant. She sent them for further testing because his symptoms seemed odd to her. The first thought was appendicitis. But when the test results came back, Patty and Mike heard something unimaginable — John was struggling with Stage 4 Chronic Kidney Disease. Adding to the shock of the diagnosis, they were also told John would need his first kidney transplant sometime within two months to two years. Their little boy essentially had very little kidney function left.
“This is a journey we did not expect to be travelling,” the Klofts shared. “John has been a relatively healthy kid. He has had some respiratory and allergy issues, but he is really active and a normal kid. John is curious, thoughtful and super smart. He loves working side-by-side with us on the farm. So, the fact he looked so healthy confused his doctors. Normally someone with only 22% kidney function would look unhealthy and have high blood pressure. John did not appear to be sick, which was a blessing in the midst of learning he was in kidney failure.”
In August 2020, John was formally accepted into the transplant program at Lucile Packard Children’s Hospital Stanford in Palo Alto, California … some 650 miles from their Oregon farm. While in Stanford for John’s testing and assessment, Patty and Mike met with a transplant social worker who talked to them about the many aspects of a transplant journey including the costs associated with a life-saving transplant. And one of the groups Mike and Patty heard about for the very first time was the Children’s Organ Transplant Association (COTA). With their approval, the social worker sent an electronic COTA Connect inquiry to the organization’s headquarters on behalf of the Kloft family. A COTA staff member reached out to them to answer their questions and to talk about fundraising for a myriad of transplant-related expenses.
On August 21, 2020, Patty and Mike sent their signed agreement to COTA’s Indiana headquarters, and the Kloft family officially became part of the COTA Family and John became a COTA Kid.
The Children’s Organ Transplant Association (COTA) uniquely understands that parents and caregivers who care for a child or young adult before, during and after a life-saving transplant have enough to deal with; therefore, COTA’s model shifts the responsibility for fundraising to a team of trained volunteers. COTA is a 501(c)3 charity so all contributions to COTA are tax deductible to the fullest extent of the law, and COTA funds are available for a lifetime of transplant-related expenses.
“One of the main reasons we decided to become part of COTA was the distance between our farm in Oregon and his transplant team in California,” Patty said. “Our insurance will cover a substantial portion of the medical expenses, but we knew we would need to travel to Stanford multiples times before and after John’s kidney transplant. Both Mike and I were determined to be compatible donors, but we still needed to go through testing and screening processes in California. Knowing that one of us would be preparing for and recovering from donating a kidney to John, our business would be strained. Without COTA, the thought of scheduling two simultaneous major surgeries that would leave one of us unable to work for four to six weeks was overwhelming. We are so lucky to have found COTA to help us build a financial bridge to get us through John’s transplant and remain financially stable on the other side.”
On October 6, 2020, a COTA fundraising specialist trained the family’s group of volunteers via telephone due to COVID-19, so fundraising for transplant-related expenses could begin immediately. The COTA staff member shared information about COTA’s fundraising process, fundraising templates, guidance and support, and the no-cost website they would be provided. COTA in honor of Johns Journey was launched, and the website was immediately available to accept online donations for transplant-related expenses.
Both Patty and Mike travelled to Stanford during the fall of 2020 to undergo living donor testing to see who would be the best kidney donor for John. Testing showed Mike’s kidney to have a complicated vascular structure; therefore, it was determined Patty would be the more suitable donor. Patty and Mike used the COTA-provided website to share the news this way: “John’s transplant team met this week to make their decision and Patty is now approved as John’s donor! We are working to set a date for the transplant, which will likely be sooner than planned with COVID-19 cases on the rise. Also because of COVID, Patty and John will have to go to Stanford 11 days prior to transplant day to quarantine and undergo multiple COVID tests. This is another financial stress with an extra 11 days in a hotel, which our insurance does not cover, but because of COTA’s support we can do it! Thank you so much for everything you are all doing … for reaching out to check on us and for donating to COTA for Johns Journey. Being able to access COTA funds is keeping us afloat and hopeful during this stressful time. Please continue sharing the COTA link, commenting and keeping all of us in your prayers.”
On February 2, 2021, Patty and Mike posted on the COTA for Johns Journey website, “We just found out that John and Patty’s surgeries will take place on St. Patrick’s Day, March 17, 2021. We will be continuing regular farm operations while we are away thanks to our amazing staff. And some of you may see us at the Beaverton Farmers Market a couple of times before we leave for California. After that, our amazing market crew will be there.”
On March 7th, the Klofts posted, “This week we reached our $100,000 COTA for Johns Journey fundraising goal!! This is a huge milestone that we could not even imagine reaching when we started this journey. We are blown away. Thanks to COTA, we can breathe so much easier. Running our business and planning for two surgeries has been very intense. COTA funds can be used for travel, lodging, food and even loss of income. This is true peace of mind for us and our family-run business. We are incredibly humbled.”
As planned, on March 17th John received his new kidney, and his second chance at life from his mom, Patty. In honor of Mother’s Day, Patty shared these thoughts about their journey to date … and her gratitude.
I get really emotional when I sit down to talk about donating a kidney to John. It was a pretty simple decision as a parent. Any mother would understand. He simply needed another piece of me. Either Mike or I could have donated. It ended up that my kidney worked out better. Once the kidney transplant happened, it went from being my kidney to John’s kidney. Now it is his job (with help from all of us) to keep his kidney healthy. Having COTA there for a lifetime of support is a huge part of that.
I want John to be successful in whatever he does. He needed a healthy kidney to make that happen. And I am so grateful COTA was there to help. COTA takes away so much of the financial stress of a transplant. With COTA, we can focus on logistics and emotional support knowing the finances are taken care of. We have great insurance, but so many expenses simply are not covered. COTA funds help with travel to and from the transplant center, overnight stays, and rental cars. For us, hotel, airfare and car rental total about $4,000 per trip to the transplant center. Thanks to COTA, that money does not come out of our family budget, which means we can still keep our family farm going. We have to keep the business going in order to keep our health insurance. COTA helps ensure we have the support we need to continue getting John the care he needs, and our family the stability it needs. We know John will one day need a second transplant. It is not if, but when. Transplants do not always last a lifetime. But COTA does.
John’s transplant happened during the pandemic. It was stressful. When COVID-19 first hit, all nonessential surgeries were cancelled. People came out of the woodwork and were so supportive when they found out about John’s diagnosis. We had two communities who really supported us — Mt. Angel, Oregon, where both Mike and I grew up (and where John is growing up). And we had the Beaverton Farmers Market community near Portland, and our network of customers from all across Oregon. We had people write us letters and tell us they had been buying our meat for years — they heard about John and wanted to help. We all loved reading the letters. It showed John that a lot of people cared. We also had friends who were willing to help with their skill sets of fundraising, communications, and nonprofit work. COTA provided amazing resources that our fundraising team really loved. It made it so much easier to get to our goal of raising $100,000 for a lifetime of care and transplant-related expenses. COTA really helped us with structure. We are very organized, running our farm and meat processing facility. But kidney disease and organ transplantation were totally new to us.
Living on a farm is a blessing. One of John’s doctors was amazed because John’s blood work showed that he was so sick, but he looked pretty normal. His medical team thought part of that was the fact John lives such a healthy, active lifestyle on Lonely Lane Farm. Being a niche producer (doing grass-fed/grass-finished beef, lamb, heritage pork and pastured goat) we were already out there educating people. We had Instagram and Facebook already set up. It was a pretty natural transition to also share what was happening with John. People had been following John growing up on the farm. His kidney transplant was one more chapter in the story we were sharing. I do not know that we would have been so ‘gung-ho’ about sharing our journey and raising funds for transplant-related expenses if we did not have the support of COTA … the website, the ideas for fundraisers and so much more. COTA staff calling to check in on us was, and continues to be, so comforting.
Around Mother’s Day 2021, Patty and Mike posted an update on the COTA for Johns Journey website, “John has been doing great since coming home last month. John had a bit of a health scare at his normal checkup, but his medical team thinks it will resolve itself. John continues to have a lot of energy and he is doing well with his new kidney protective guard that he wears around his waist. Our whole family has been back at the Beaverton Farmers Market for the past few weeks, and it has been GREAT to see our friends and our customers. Patty still gets tired, but not as much as before. Thank you for all of your support!”
March 17, 2022, was John’s One Year Kidney Anniversary. The Klofts posted this update: “One year ago today, John got a new kidney … and Patty got one kidney lighter. Seeing John’s health improve so much in one year has been incredible. As parents, it means everything. John grew five inches. He has way more energy and he is reading better. When your kidneys are not functioning, your whole body suffers. One thing we have learned this year is that kidney disease is a lifelong journey. It is not just ‘transplant and cured,’ which is what we thought before we were living it. This is why we are so grateful to COTA.”
Patty and Mike summarized their gratitude in this way, “COTA helps a family like ours truly navigate a lifetime of transplant-related expenses with a team to support us without ever charging a fee. We are lucky to have good insurance. But even so, many costs pop up that are not covered. Family travel expenses and overnight stays near the transplant center. Travel back and forth to California for kidney checkups. Expensive immunosuppressive medications. Seeing John healthy and knowing our family is financially secure … these are the best gifts ever.”
This Mother’s Day, John will likely be spending the weekend getting flowers for his mom at the Beaverton Farmers Market, checking up on the calves and goat kids on the farm, walking pastures with parents and farm dogs, creating artwork for Mom, and probably soaking up tons of sunshine and fresh air. When asked what he hopes for the future, John said, “I hope my kidney lasts a very long time.” Patty and Mike’s hope for the future is that John can follow his dreams, perhaps making Lonely Lane Farms a fourth-generation family-owned farm.
