March 3, 2025 — March is National Kidney Month, which is a 31-day awareness-raising, grassroots effort to spread the word across the country about the importance of kidney health. March 18th will be celebrated this year as World Kidney Day, which highlights the importance of preventive interventions to avert the onset and progression of kidney disease. An Idaho family knows all too well the difference a healthy kidney can make and hopes their daughter’s transplant journey will help a family facing a kidney crisis.
Thirteen-year-old Sydney DeRaita’s first years of life were normal and relatively uneventful. Mom Susan says their transplant journey started on January 7, 2022, when 10-year-old Sydney had a tooth extraction that would not heal properly. She explained, “The dentist’s office had her in several times, but could not stop the bleeding. We reached out for a second opinion with another dentist and he was able to fix the clotting issue. The bleeding stopped, but Sydney continued to vomit and was very pale.” On January 31, 2022, Susan and Dad Ben took Sydney to the local emergency room where they were told she was extremely anemic and in kidney failure. “This was so shocking to us and did not feel real,” Susan remembers.
Within days of hearing this alarming news, Sydney received multiple blood transfusions and was placed on hemodialysis – a process where a catheter is surgically attached to a central vein in the patient’s chest and connected to a machine that slowly removes and cleans the blood before returning it back into the body. In Sydney’s case, hemodialysis typically took five hours and was scheduled at the hospital during the middle of the day … three times a week. After a month of hemodialysis, Sydney underwent a procedure to have a catheter placed in her stomach with an exit transfer site so her team could transition her to peritoneal dialysis, which could be done at home for 10-12 hours primarily while she was sleeping.
For this family, much of 2022 was filled with dialysis, doctors’ visits, numerous needle pricks, medications and countless tests. Sydney was in and out of the hospital many times. During these long months, Susan and Ben focused much of their attention on nutrition and other natural solutions to try and keep Sydney healthy. But ultimately, once she was diagnosed with End Stage Renal Disease, they knew Sydney would need a new kidney to have the best quality of life. Since there is not a transplant facility in Idaho, which is where the DeRaita family was living at this time, Susan and Ben were able to choose where they wanted to seek Sydney’s transplant. They were part of an online transplant family support group, which had members who shared success stories regarding the transplant team at the Miami Transplant Institute. There was also a COTA family participating in the group who encouraged others to think about the need to fundraise for transplant-related expenses. This was the first time Susan and Ben heard this suggestion. They scheduled a Zoom call with the Miami transplant team in January 2023 and decided they would make the 2,940-mile trip to learn more about a kidney transplant for their daughter.
COTA received an online ‘Get Started’ notification from Susan and the family’s signed agreement arrived at COTA’s headquarters in February 2023 … the DeRaita family officially became part of the COTA Family and Sydney became a COTA Kid.
COTA uniquely understands that parents 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 are tax deductible to the fullest extent of the law, and funds are available for a lifetime of transplant-related expenses.
On March 16th, a COTA fundraising specialist trained the family’s group of volunteers via telephone so fundraising for transplant-related expenses could begin immediately. The staff member shared information about the organization’s fundraising process, fundraising templates, guidance and support, and the no-cost website they would be provided. COTA in honor of Sydneys Journey was launched, and the website was immediately available for online donations for transplant-related expenses. As soon as it was available, Susan posted that she would be updating their family, friends and followers in the ‘Dear Diary’ manner she had used when she was Sydney’s age.
Dear Diary #1: We leave for Miami on March 18th. For my evaluation to be her donor, there will be all sorts of tests. Right now, we are preparing to pack; we haven’t travelled on a plane with her and all of the dialysis supplies yet. We shipped 10 boxes to where we will be staying! Being an eligible donor is not just about having the same blood type. It has many moving parts to it. I will have numerous tests donor to see if I am a match.
Dear Diary #2: We are staying at the Ronald McDonald House. They have everything here. Today I completed testing for the living donor piece. If I am the donor, the transplant doctor will use a robot to perform the surgery. Did you know that when the recipient gets the kidney, her kidney stays there and the donor’s kidney is placed below the hip? Sydney’s evaluations start tomorrow.
Dear Diary #5: No call yet (about whether I can be her donor). Like Elsa says, I will let it go for now.
Dear Diary #6: I received the news today, April 11th, that I can donate a kidney to Sydney! HOORAY! We decided to wait to travel to Miami until school finishes in mid-May. The transplant center has requested that we be in Miami by May 23rd for a few more tests. It’s a roller coaster of emotions. One minute I am terrified, the next minute I am encouraged and sometimes I don’t know what I feel.
Dear Diary #8: Last night, May 10th, was a COTA for Sydneys Journey fundraiser at Café Zupa’s. What an amazing turnout! The line was out the door most of the night. So many friends came from Cole Valley Christian School, Sydney’s Speech/OT office, our chiropractor’s office and our neighborhood. I want to shout an enormous thank you to our COTA volunteers. When we were introduced to COTA, we needed to find volunteers to help with fundraising. I was VERY intimidated to ask anyone. I will never be able to thank our three lead COTA volunteers enough.
Dear Diary #11: The transplant surgery has been set. I will have two surgeons – one to observe and the other will perform the surgery with a robot. They are taking my left kidney and placing it under her right hip because the left renal vein is longer. He said my kidney function will decrease about 20% and my kidney will grow in Sydney about 20% in size. Wild right?
Dear Diary #12: I had my labs drawn … 18 vials! Sydney’s nephrologist appointment went very well. Sydney’s needle trauma has gotten better. June 1st will be Sydney’s last night of dialysis.
On June 2, 2023, Sydney received a new kidney, and a second chance at life, from her mother, Susan. The kidney team in Miami told the family the transplant was a complete success. They also told Ben it was likely Sydney and Susan would need to stay in Miami for two to three months so their recoveries could be monitored before they could travel home to Idaho. Towards the end of July, they heard the news they had been waiting for … they were able to book flights and return to their home. On July 28, 2023, a much-healthier Sydney and a much-relieved Susan boarded the plane and flew home.
“COTA supported our family before, during and after Sydney’s kidney transplant,” Susan said. “Our COTA team utilized the provided resources to start fundraising immediately. Each time we were in Miami, COTA funds assisted with lodging, car rental, gas and food … in addition to the large medical bills that were part of each trip we made thousands of miles from home.”
Today, Sydney has a kidney team near the family’s home, but they stay in touch with the Miami transplant team via Zoom. The Miami team did want to see Sydney in January 2024, but this time … Dad Ben made that trip with Sydney. And once again, the family was grateful for COTA’s assistance with transplant-related expenses.
“I think the number one reason a new transplant family should reach out to COTA is the partnership that is created,” Susan said. “COTA partners with each transplant family and provides significant help and counsel with transplant-related expenses … specifically with the many expenses not covered by health insurance – including living donor expenses. Having the peace of mind that with COTA by your side, you do not have to worry about finances while going through a sometimes challenging and emotional transplant journey is a very big blessing.”
Sydney, now a teenager, is loving life. Her favorite things are Pokémon, anime, and anything that is purple. She is living life to the fullest while Susan and Ben are dreaming about her future, and grateful to be doing so. They are also breathing easier, which Susan says COTA has allowed them to do because they do not have to worry about the financial challenges associated with a life-saving transplant. “COTA helped us relax and focus on Sydney’s healing, and my healing, post-transplant … and will continue to do so for a lifetime.”
March is designated as National Kidney Month to raise awareness about the prevention and early detection of kidney disease. In the United States, kidney diseases are the ninth leading cause of death. More than 35 million Americans have kidney disease, and many do not know it. There are more than 90,000 people waiting for kidney transplants, with more than 800,000 people in the United States suffering with kidney failure. More than 3,000 new patients are added to the kidney waiting list each month; 12 people die each day while waiting for a life-saving kidney transplant. Every 9 minutes someone is added to the kidney transplant list. You can visit www.RegisterMe.org to indicate your wish to be a life-saving donor.
