Bloomington, Indiana — January 6, 2016 — January is a month full of celebration and joy for the Copley family of Spokane, Washington. Sixteen years ago on January 14th, the family’s first girl, Anna Rebekah, was born and a few days later taken home to meet her trio of big brothers. Spunky and smiley Anna will turn 16 this year because one of those brothers gave her the ultimate gift — the gift of life.
Anna Copley was born to ecstatic parents, John and Rebecca. They already had three amazing boys at home (Andrew then age 7, Matthew then age 5 and Luke then 18 months old) so Anna’s arrival was another perfect chapter in this family’s story.
According to Rebecca, Anna’s birth was very normal and her birth weight was just over eight pounds. However, within her first day of life there were red flags because Anna was not nursing well and she seemed very limp. Baby Anna was sent home from the hospital, but these problems persisted. The first few weeks of Anna’s life were spent making numerous trips to the hospital’s lactation consultant and experimenting with multiple ways to feed her. Her weight decreased with every trip.
At three weeks old, Anna contracted respiratory syncytial virus (RSV) and was admitted to their local hospital’s pediatric ICU. Anna quit breathing during her first night inpatient and she had to be intubated. During her three-week hospital stay, the infant’s kidneys failed and she required several blood transfusions. But after a couple of weeks, her kidneys started working again. Anna was released from the hospital; however, she still had feeding issues and very low muscle tone.
For the next five years, much of the family’s attention was focused on finding ways to get Anna to gain weight. The little girl also underwent physical therapy to address her muscle tone challenges. By the time Anna entered kindergarten, she was very small for her age but seemingly normal in all other aspects. Her kidneys were monitored periodically, but during these early years they were functioning at a ‘low normal’ range.
In September 2009 when Anna started fourth grade, her kidneys began to fail as they had during her first weeks of life. At the age of nine she was diagnosed with beginning stage 4 chronic kidney failure. Anna was referred to a pediatric nephrologist in the area, and she started having regular nephrology visits and lab work. She was put on a kidney diet and prescribed medications to slow the disease’s progression. The combination of diet and medication worked well for a few years, and she was able to continue on this treatment path into middle school.
By the fall of Anna’s eighth grade year her condition worsened. She was chronically tired and struggled with insomnia, headaches and concentration. Anna had no appetite and started losing weight. Once the winter months came, she itched constantly and started experiencing intense kidney pain. On February 6, 2014, what the family had avoided for a very long time finally happened. Anna was placed on dialysis. She was able to continue attending school and tried to stay involved in her many activities, which included her love of music.
During this time, the transplant team at Seattle Children’s Hospital started diligently working to plan Anna’s inevitable, life-saving kidney transplant. Anna’s oldest brother, Andrew, started the process of being tested as her donor. At the same time, John and Rebecca started thinking about the mounting expenses the family would encounter due to Anna’s transplant and Andrew’s donation. It was during this time of testing when the staff at Seattle Children’s recommended the family research the Children’s Organ Transplant Association (COTA).
COTA uniquely understands that parents who have a child or young adult facing a life-saving transplant have enough to deal with, so COTA’s model shifts the responsibility for fundraising to a community team of trained volunteers. In early May 2014 a COTA fundraising specialist traveled to Spokane to meet with the volunteers for the COTA campaign in honor of Anna and walked them through the entire process. Within days of their on-site training, this COTA team was off and running, and within months these COTA volunteers raised more than $50,000 for transplant-related expenses.
“COTA is a 501(c)3 charity so all contributions to COTA in honor of Anna are tax deductible to the fullest extent of the law, and these COTA funds are available for Anna’s lifetime,” Rebecca explained. “From the first moment we started working with COTA, we felt a sense of relief.”
By late May, Andrew was cleared to be Anna’s kidney donor. Andrew’s wedding date was set for June 2014 and Anna was asked to be a bridesmaid. Unfortunately, Anna contracted a staph infection from her dialysis and was not able to attend the wedding. It was heartbreaking for the entire family, but strengthened their resolve to make sure the transplant happened … and happened quickly.
Anna’s transplant was scheduled for August 6th to allow Andrew ample time for his honeymoon and for getting settled with his wife, Carly. In early August, the family relocated to Seattle. But two days prior to the transplant, it was discovered that Anna’s immune system was ‘ramped up’ and doctors feared Anna’s body would work overtime to reject Andrew’s kidney if the transplant occurred at this time. Terribly disappointed, the family returned to Spokane where Anna’s daily dialysis regimen started once again. On a positive note, Anna was able to attend marching band camp while on dialysis and to start high school with her classmates in September.
One week before Thanksgiving 2014, the family headed to Seattle once again. This time all test results looked good. On December 3rd, Anna received her life-saving kidney from Andrew. Anna did very well immediately post-transplant. Andrew was released to return home to Spokane on December 11th. Anna was released from the hospital on December 20th, but she and Rebecca stayed in Seattle for monitoring until the middle of March 2015.
According to John and Rebecca, “COTA has given us tremendous hope for Anna’s future. We know Anna will have ongoing medical expenses throughout her life, and we also know she will likely need another transplant at some point in the future. Anna will always need to take expensive medications. Since COTA funds are available for Anna’s lifetime, we feel confident she can move into adulthood and face whatever medical challenges that come her way.”
Within two weeks of returning home and returning to school, Anna participated in a jazz festival, a bassoon festival and a concert band festival. She continues to be grateful for her big brother’s gift. “We are continually blown away by what our oldest son did for his little sister. Andrew told us from the time she was diagnosed at the age of 9 that he would give her a kidney when she needed it. He was in high school at the time. When she needed a kidney, Andrew was age 21 and he was indeed a match,” Rebecca said.
Today, Anna is doing well. Her first year post-transplant has not been easy, but Anna continues to push forward with her music, academic studies and church commitments. Anna is a gifted musician who practices and performs, even when periodic low white blood cell counts make her tired. She is active in her church youth group; Anna is definitely a role model for many throughout the Spokane community who rallied to raise funds for COTA in her honor.
Rebecca frequently blogged on Anna’s COTA community campaign website. Five months after Anna’s transplant, Rebecca wrote: “Last week I sent another group of Anna’s medical bills to COTA. Every time I do this, I am reminded of the generosity of so many people who have given to COTA in Anna’s honor. What would we do without you? I remember what it was like before COTA was helping us. It was stressful to say the least and the bills then weren’t anywhere near the amounts they have been recently … I want all of you who have given to know that COTA is absolutely wonderful! They have been there for us through this whole process — from taking care of Andrew and Carly’s expenses while they were in Seattle for the donor surgery, to paying for necessary medications for Anna that we couldn’t possibly afford. They are quick to respond and always so helpful. I’ve cried over the phone with them and have received nothing but understanding and encouragement while saying they would take care of it. And they did — quickly. COTA has reimbursed us when we’ve had to pay for medications with a credit card because we needed them NOW. We are eternally grateful to COTA.”
For more information about the Children’s Organ Transplant Association, or to find a COTA family in your area, please email gro.a1475003498toc@m1475003498ik1475003498.