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.
Royce was born with branchiootorenal syndrome in China on August 10, 2012. The syndrome manifested itself through small underdeveloped kidneys, an underdeveloped right outer ear and severe bilateral hearing loss. Starting at the age of nine months, Royce had the privilege of living with a foster family until his forever mom, Jennie, brought him home to Minnesota in March of 2019.
Jennie felt called to be Royce’s forever mom from the first time she saw a video of him back in September of 2017. The entire adoption process from first application to having Royce in her arms took Jennie roughly 20 months. Those months were filled with paperwork, in person and online education, visits with social workers, a trip to be finger printed, and endless hours of wondering how Royce was doing in China. The last health update, which included Royce’s height and weight, was sent from China in January of 2018. As the final weeks before traveling to China passed in early 2019, Jennie prepared her heart for the worst case scenario regarding Royce’s health.
Finally, on Monday March 18, 2019, Jennie held Royce for the first time! Royce appeared happy and healthy with an infectious laugh. The next 11 days in China were a whirlwind of adoption appointments, sightseeing, shopping, eating, and playing in the hotel room. Royce loved playing with his cousins, Delaney and Max, who were also adopted from China as toddlers. He learned quickly that Mom would throw him on the bed and wrestle, Aunt Jackie would let him play on her tablet, Grandma Rosie would give him anything he wanted to eat, Delaney was the best at blowing bubbles, and Max had the coolest games on his phone.
Through all of the fun and excitement, Jennie quietly observed Royce’s lack of stamina, his waxing and waning appetite, his bizarre gagging and retching, and the fact that he had not gained a single ounce of weight in almost 15 months. On Friday March 29, the group of six boarded their flight from Guangzhou, China to their layover in Los Angeles. Ten hours into the 13 hour flight, Royce had a seizure. Thankfully, Jennie (an RN) and her mom Rosemary (a retired RN) had experience with seizures and were able to manage the situation with the help of a few kind physician passengers. Upon arrival in LA, Royce and Jennie were taken by ambulance to the closest Emergency Room to have Royce assessed. The doctors asked Jennie if she knew about Royce’s extremely bad kidney function. Her response was, “I knew his kidney function couldn’t be very good…I just didn’t know exactly how bad.” After reassuring the doctors they already has appointments scheduled at Mayo Clinic and begging the doctors to allow them to continue on their trip home, Royce and Jennie headed back to the airport.
On Monday April 1, Royce was admitted to St. Mary’s Hospital and only 3 short days later he had his first hemodialysis run. Royce has been dialysis dependent since then in order to keep him feeling good and his body as healthy as possible. He was approved for a kidney transplant in May of 2019 but was not actively listed on the transplant list until the end of August.
During the remainder of 2019, Royce had six surgeries, was fitted with his first hearing aids, began first grade full time in the fall, had dialysis 3 days a week every week, was a ring bearer in his cousin’s wedding, gained weight, started growth hormone shots, celebrated his seventh birthday, his first Halloween and Thanksgiving, learned American Sign Language, began learning to speak actual words, learned the English alphabet, celebrated his first American Christmas (he actual had celebrated Christmas with his foster family in China), got his first loose tooth, fell in love with his two kitty siblings, played in the snow and fallen leaves for the first time, and countless other events .
Our family’s biggest hope for 2020 is that Royce will experience life with a new kidney. Please follow along as Royce’s mom, Jennie, blogs about their life. If you are interested reading about their journey from before 2020, please visit Royce’s Facebook page by searching “Royce’s journey from China to a new kidney and beyond.”