“He was partially paralyzed, and it could take him up to a year to fully recover”
The past six months have been extremely challenging for young RJ. In and out of the hospital on at least 12 prior occasions with respiratory issues related to laryngomalacia and rhinoviruses, the eight year old is very familiar with being confined to the ICU and needing x-rays of his chest and lungs. The floppy tissue above RJ’s vocal cords falls into his airway when he breathes (laryngomalacia), a problem that is likely due to an underdeveloped part of his nervous system. Suffering from recurrent rhinoviruses also puts him at risk for infections in the small breathing passages of his lungs.
It was RJ’s difficulty breathing that triggered his most recent diagnosis, an illness that would become the main focus of his doctor’s concern. At first he presented with a generalized weakness, but then RJ’s symptoms progressed into his inability to walk with delayed motor function. His doctor performed a lumbar puncture (spinal tap) by inserting a needle into RJ’s spine to remove a sample of cerebrospinal fluid. After testing the fluid, his doctor confirmed that RJ was suffering from Guillain-Barre syndrome, a rare disorder in which the body’s immune system attacks its own nerves. This inflammatory condition starts with weakness, tingling, and severe nerve pain in the feet and legs. Then, the symptoms usually work their way to the top of the body to impair the upper extremities as well. RJ was immediately placed on high doses of steroids and began a daily regimen of occupational and physical therapies to help regain the motor function he had lost. RJ was primarily affected from his feet to his lower back, causing partial paralysis. Due to the extent of the damage, RJ had to relearn to sit up, stand, and crawl. He regressed to the point where he required assistance meeting his most basic needs. In addition, his family had to worry about the possibility of associated complications such as RJ developing blood clots, cardiac arrhythmias, going into respiratory distress, and even having a heart attack as a result of his condition. RJ’s doctors said it would take anywhere from six months to a year for him to make a full recovery.
RJ was discharged from the hospital, but was still not able to walk independently. Determined to push himself during his therapy sessions, RJ never lost sight of his goal. His willpower throughout rehabilitation and unwavering commitment to overcoming his progressive muscle weakness were key components in helping RJ recover. In the end, all of his hard work paid off when he surpassed everyone’s wildest expectations by recovering in a mere six weeks.
It is with great pride that we honor RJ’s brave perseverance by recognizing him as Kid’s Wish Network’s along with Driscoll Children’s Hospital’s Hero of the Month. Way to go, RJ!