Perspective: Caring for my son on his kidney disease journey
My name is Beth Nalker, and I’m fortunate to call myself Henry’s mother. When Henry was diagnosed at age five with progressive kidney disease by doctors at Walter Reed National Military Medical Center, my husband and I learned that our family had begun a lifelong journey involving Henry’s kidneys. From the time he was diagnosed, we worked to educate ourselves about kidney disease. Fortunately, our son had excellent nephrologists and medical staff at Walter Reed and later at Johns Hopkins Hospital to guide us and care for Henry.
Prior to his transplant, unlike other kids his age, Henry was getting injections at home, going to lots of doctor appointments, getting lots of blood drawn, and taking lots of medications. But because Henry was born with a genetic brain disorder affecting all of his motor function, he already did not live the life of a typical kid. Nonetheless, it was hard as a parent to see the complications of kidney disease added to his list of medical concerns. However, I was grateful for the great medical care he received and thankful that his kidney disease did not prevent him from participating in most things, such as adapted sports activities, music lessons and extracurricular activities at school.
Henry was listed on the UNOS transplant list at age 10. A few years later, my husband and I began the process of determining if we were donor matches. We were incredibly fortunate to both be matches, and we began the extensive tests to make sure we were suitable donors. In the end, I was chosen as the donor and extremely thankful that I could do this for my son. I only had to stay in the hospital for two days as I recovered from the surgery and spent much of my time afterwards with Henry in the hospital on and off for about three weeks as he recovered.
Henry and I got to spend a lot of time together after he was out of the hospital because he had to have homebound instruction for three months until he was able to safely return to school without risking infections that could harm his new kidney. Fortunately, he had an excellent homebound instructor from our school district and dedicated teachers who kept in touch with him during this period at home. I know missing school and missing out on a lot of other activities was not easy for him but staying in touch with school and friends helped him through it.
Life was far from our “normal,” but we were developing a new normal. One thing that helped us in this process was meeting families who had been through the same experience as us. That fall we attended Johns Hopkins’ reunion for kidney transplant recipients and their families, which takes place every two years. Since Henry was a recent transplant recipient at the time of our first reunion, it was very helpful to hear from other children and families about how their lives adapted after transplant.
During this reunion, another recipient told Henry about Camp All-Stars, an overnight camp for kids with kidney disease that Johns Hopkins holds for one weekend a year. Henry was very interested, so we signed him up for his first-ever overnight camp experience. We were excited for Henry and comforted that, for the first time, he could attend an overnight camp setting where his needs could be accommodated, and safety and medical concerns would be a high priority.
What makes Camp All-Stars unique is that many of the kids who attend would not be able to have this experience any other way because of their complicated medical situation, and for some, also their financial situation. Camp All-Stars provides them the opportunity to enjoy outside activities, while surrounded by medical professionals who know how to handle any issues that may arise. It is hard to find that anywhere else.
While the camp is most important for the children, it also gives their families a chance to take a short break from the everyday caregiving routine of managing medication and other factors that come with a child who has kidney disease. Camp All-Stars provides our children with a wonderful experience, but also provides us parents with a night to take a break. I am so appreciative of Camp All-Stars and for everything their sponsorship organizations, including the American Kidney Fund, have done for the pediatric kidney community.
Read Beth’s son Henry’s perspective on growing up with kidney disease.
The American Kidney Fund (AKF) is proud to sponsor Camp All-Stars, thanks in part to a generous gift from the Robert I. Schattner Foundation that enables AKF to support summer enrichment activities for young kidney patients.