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Elmhurst family keeps on fighting disease

My name is Salvatore (Sonny) Raguso. I live in Elmhurst and I have polycystic kidney disease (PKD).

When I was about 5 years old, my father became very ill, and he was hospitalized. He had exploratory surgery done and it was discovered that he had polycystic kidney disease.

At the time, around 1966, not much was known about the disease, its causes or its treatment. For the next 15 years, my family lived with my father's illness and the ups and downs that went with it. This included changing diet, hospitalizations, dialysis.

In 1981, my father received his first of two kidney transplants. He spent almost six months in the hospital due to side effects from his medications, many of which were somewhat experimental. His body rejected the kidney about two years later and he went on dialysis again before receiving his second transplant, which was a perfect match.

Unfortunately, because of his medications and the relatively high doses he was on, he developed a form of leukemia and passed away a little over two years later.

My uncle and cousins on my father's side, as well as my brother and I, all have PKD. My uncle received his kidney in 2006 and, aside from some issues with rupturing cysts, is doing well.

As for me, I had to go on dialysis for about 18 months. I had many complications with the cysts on my kidneys and their size were so large that the doctors had to remove both of my kidneys four months before my transplant.

Because of the number of cysts on my kidneys, the doctor had to "pop" some of my cysts to take them out. In the end, they were each larger than a football and together weighed approximately 36 pounds. There was a difficult recovery, but on Dec. 3, 2014, my oldest daughter, Gabrielle Raguso, donated her kidney to me.

My whole extended family and friends have been involved with the PKD Foundation since about 2005. My younger daughter, Theresa, is currently the walk co-coordinator for Chicago. Sal's Pals is our team at the Chicago walk, and we encourage and inform people about this disease through social media and personal solicitations.

Since other family members and friends are afflicted with PKD, we intend to continue our efforts with the PKD Foundation until a cure is found.

Sal's Pals - The Raguso family

Sonny Raguso, left, with his brother Joseph, dad Ernie, and baby sister Christina at Brookfield Zoo in 1972. Ernie died of PKD and both Sonny and his brother Joseph are fighting the disease. Courtesy of Raguso family
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