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Kennedy is a sweet, bright and funny 7-year-old girl. In March of 2015, Kennedy was taken to the emergency room with extremely swollen ankles and feet. She was diagnosed with nephrotic syndrome, where high levels of protein are found in the urine. It is a definite sign that something is wrong with the kidneys.
Kennedy had her first kidney biopsy in April of 2015 where she was diagnosed with minimal change disease. Often minimal change disease can be treated with medications and many patients go into remission. However, Kennedy continued to have severe swelling in her eyelids, legs and feet. Continued high levels of protein in her urine were present as well, indicating no sign of remission. Kennedy had frequent hospitalizations where she received infusions to remove the excess fluid from her body. During this time, Kennedy was on a number of medications that are known to treat minimal change disease, but nothing worked well enough to put her in remission.
In January of 2016, Kennedy had a second kidney biopsy. This time we received the diagnosis of focal segmental glomerulosclerosis (FSGS). This disease causes damage to the kidney filters and in most cases leads to end stage renal failure. There are some medications that have been known to be effective in reducing the damage from FSGS, but Kennedy did not respond to any treatments.
To manage the disease as best as possible, Kennedy takes several medications multiple times daily. She goes to SSM Health Cardinal Glennon Children’s Hospital weekly for an albumin infusion and IV lasix; which keeps the swelling somewhat under control and limits her number of hospital admissions. Kennedy’s immunosuppression often leads to sickness, which frequently requires hospitalization.
It is projected that Kennedy will need a kidney transplant in the next one to two years. Although we wish Kennedy was not sick and we were not in this situation, we have been very fortunate to be a part of Cardinal Glennon. With weekly infusions and repeated hospital visits, we have definitely forged a relationship with doctors, nurses, and other staff members.
Kennedy is a dedicated reader, and has made it her calling to collect new books for the patients of Cardinal Glennon. Kennedy’s book drives and donations to the Shining Star School are a way we can give back to the hospital who gives so much to us. Please consider how you can give to Cardinal Glennon to help kids like Kennedy.