Imagine being a single mom far from home in a hospital where your oldest child fights for his life. Among other serious medical issues, his kidneys are failing. On the nights he’s doing better, you escape to sleep in a nearby Ronald McDonald House. It’s a comfortable, welcoming place but you miss your two younger children who are staying with your sister back home in Kansas. You worry because your money has run out and you have no idea how you will buy food in the coming days. The hospital social worker suggests contacting Patient Services at the National Kidney Foundation of Michigan and applying for their Emergency Fund.
It is now November 2019. “We are in such a better place now,” states Grace Yount, 30, who is the mom from the story. “I literally had no money and no food when the foundation gave me a gift card to Meijer. And now we are giving back.”
Grace’s giving back has consisted of forming Team Jaxson, named after her son with kidney disease, and raising money for the NKFM at the 2019 Kidney Walk at the Detroit Zoo. Now Jaxson has been chosen as our Kidney Kid for the 2019 Kidney Ball. And his mom has a powerful story of strength, resilience and hope.
Grace Yount was living in Kansas when she delivered her son, Jaxson Scott prematurely. He weighed only 2 lbs., 5 oz. He spent the next 2 and a half months of his life in a Neonatal Intensive Care Unit. Once he was home, Jaxson seemed like a normal baby. Then, at one-year-old, his legs stopped moving. Doctors discovered an abdominal aortic aneurysm (a weakened spot in a large artery that can rupture and cause massive bleeding if not repaired) as well as tumors along his spinal cord and on one kidney. Due to the complexity of the surgeries he needed, he was referred to C.S. Mott Children’s Hospital at the University of Michigan.
After the surgery in Michigan, he underwent a year of chemotherapy in Kansas in order to shrink the tumors, which were benign but growing. During the next 2 to 3 years, his vascular disease (reduced blood flow to various organs) caused his small intestine to die, requiring removal of two-thirds of his bowels. Also during this time, he suffered several bouts of acute kidney failure. In addition, one damaged kidney was causing uncontrolled high blood pressure, which damaged his kidneys even further.
Then, Jaxson’s kidneys shut down. His little body swelled with all the fluid he was retaining that surrounded most of his internal organs. It also caused his left lung to collapse and require a chest tube so Jaxson could breathe. At this point, Jaxson needed a kidney transplant but the surgery would need to be done at Mott where Dr. John Magee, both a vascular and a transplant surgeon, could make it happen. After five years of shuttling back and forth between Kansas and Michigan, Grace and her children moved permanently to Ann Arbor on June 13, 2017.
Jaxson had his big surgery on August 29, 2018. His mom had tested as a perfect match and donated her kidney to her son.
Today, Jaxson is a happy nine-year-old who says the only thing he can’t do like other kids is “walk”. “He thinks he’s normal—he doesn’t think he’s different. He is so resilient and quite the social butterfly,” says his mom. “Because this has been his whole life up to now, we don’t take anything for granted. My two younger children, Genevieve, 5, and Abraham, 4, have more compassion after being raised with Jaxson, who uses a wheelchair. His legs never recovered from the tumors on his spine.
Jaxson attends 2nd grade at Abbott Elementary School. A nurse is with him at school because of his physical disability. Developmentally, Jaxson may be a little behind due to missing a lot of school when he was sick. His teachers say he is very sharp and is catching up quickly.
He has played wheelchair basketball and is very active. Although he may be a little nerdy, he likes the Marvel Universe, Spiderman, and watching YouTube videos. “He is also very justice-oriented, continues mom. “At school, he always sticks up for other kids. He doesn’t like to see other kids fight.”
Jaxson’s sister Genevieve is in kindergarten. She likes to help her mom, help Jaxson to reach and open things and loves to color, draw and paint.
Jaxson’s brother Abraham is in preschool. With hair down to the middle of his back, he is very strong-willed and funny. Similar to other families, the two brothers get along well but do fight.
Grace works full-time as a waitress in Inkster, where her employer has been incredibly supportive. In addition to letting her take extended time off for the surgery, they held a fundraiser to help with Grace’s expenses while she was out. “I have this wonderful community of support where I work,” states Grace. “And two people that also work here have shared that they have both had kidney transplants.”
Read about Jaxson’s adventure as the NKFM’s Kidney Kid at the 2019 Kidney Ball.