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Team Ferrauilo

Team Ferrauilo

Team Ferrauilo

Kidney Disease has been affecting our family for generations. Our genetic disease is called Polycystic Kidney Disease and it causes cysts to grow inside the kidneys. Over time these cysts grow bigger and multiply, causing the kidneys to enlarge and eventually lose function.

The first known case of PKD in our family was my great grandmother Mary DiMauro Ferrauilo. She was officially diagnosed in the 1970s, making her the 1st generation of what seems to be our family's never-ending disease. Her son (my grandpa) Michael Ferrauilo was the oldest of six children. He went to get tested in hopes of becoming a kidney donor for his mom. However testing revealed that he too had the disease, and not only that but he was already losing function. He ended up on dialysis within 2 years. Michael's remaining siblings went to get tested to see who could be a donor for their mom. Three out of the six children were diagnosed with PKD -- Michael, Bonnie, and Debbie, who also happened to be the 3 oldest children. In the end Mary's doctors decided that she had too many other comorbidites that  wouldn't make her a good candidate for a kidney transplant. So she lived the rest of her life on dialysis. Mary's brother Joe DiMauro also had the disease and spent his life on dialysis as well.

My grandpa Michael Ferrauilo "Sr" started off the 2nd generation of this disease. He was on dialysis for 12 years before receiving his first kidney transplant (and the family's first!) from his youngest sibling Teresa in February 1994. She truly paved the way as the first living donor of our family. And not only that, but this was pre-laparoscopic times--back when they had to break the ribs to get the kidney! The first Ferrauilo kidney transplant was a huge success! But like all good things, all transplanted kidneys only last so long. That kidney lasted 13 years which was a long time. Grandpa received his second kidney transplant from his partner Giovanna in 2009, and it lasted until he passed in 2015. My great aunt Bonnie received her first kidney transplant in 2001 from her son-in-law's cousin after he sadly passed. She received her second transplant from a cadaver in December 2005 which lasted until recently. She has been back on dialysis since early 2023. My great aunt Debbie was on a test drug for a number of years in hopes of avoiding failure but in the end she needed a transplant and received her kidney from cousin Paula in February 2019. Patti Ann is Joe DiMauro's daughter and she received a kidney transplant as well.

My dad Michael Ferrauilo "Jr" started off the 3rd generation of the disease. He was the oldest of 3 children, all of which inherited the disease. He was diagnosed in his mid-20s. For years he was closely monitored and eventually went into kidney failure when he turned 40. He received his kidney transplant from my mom Nancy in 2006, and she became the first non-related living donor in our family. My dad's kidney lasted almost 16 years until 2021 when he got Covid. Kim Ferrauilo was my dad's younger sister and she went on dialysis in 2017 when she was 51. She never got a kidney transplant but she was the queen of the dialysis clinic! Joe Ferrauilo is my dad's younger brother. He received his first kidney transplant in October 2006 from his coworker Pam, and his second kidney transplant in 2022 from his wife Michele. My dad's cousin Patrick is Patti Ann's son and he had a kidney transplant in December 2022. My dad's cousin Tifany is my great aunt Bonnie's daughter and she is our family's most recent successful transplant! She received her kidney in May 2023 from her coworker Julie.

I start off the 4th generation of PKD. I was diagnosed while still in utero. I'm doing fine and am simply just being monitored by a nephrologist. Thankfully my only sibling Emily does not have the disease. Alexandria Poudrier is my first cousin and Kimberly's daughter. She was recently diagnosed with PKD in 2018.

Whether or not our family disease transcends into the 5th generation is still questionable. I had a son (another Michael) in November 2022 and while I was still pregnant with him they found that his kidneys were enlarged with multiple cysts on both kidneys. However his post-birth ultrasound was surprisingly "normal". He hasn't been diagnosed with the disease and I have no interest in prying any further at this time. I plan to have him checked again in the future.

Of our family members who have the disease, most have gone into kidney failure despite close monitoring, preventative measures, and even going on test drugs. They have been on dialysis which is an exhausting and time-consuming limitation to their quality of life. Some used dialysis as a bridge to transplant and some lived their life on dialysis because they weren't healthy enough to receive a kidney. A transplant is really the way to go for an improved quality of life. But even after a successful transplant it's not necessarily smooth sailing. It's a long journey of immunosuppression drugs that put the body at constant risk of infection. Even just the common cold could pose a greater risk for an immunosuppressed person--a sad price to pay for having a working kidney. The comorbidities that coincide with kidney disease don't go away--diabetes, hypertension, anemia, dysfunction of other organs, etc.--they all can prevent someone from getting a kidney or threaten their life after getting a kidney. All kidney recipient patients need to be on hefty immunosuppression therapy so that their bodies don't attack the "foreign" transplanted kidney. Medicine has come a long way over the years. One of the reasons why my mom was able to be a non-related donor for my dad was because the immunosuppression drugs are so much better these days. However, the drugs needed to keep the kidney alive were also a contributing factor to my dad's passing from Covid and hospital-acquired MRSA. We can only hope that medicine will continue to improve. If only there were drugs that could protect the kidney but still enable the recipient to fight off other illnesses... if only. What we need is further research and new ideas. 

This year, our team has joined others throughout the country to fight against kidney disease. On September 17, 2023 we’ll walk for our loved ones who cope with this devastating chronic illness each day – and for those who lost their fight too soon. The National Kidney Foundation as been a powerful resource and advocate for our family for generations. With your support, we can help them develop new programs for other families in need, improve the quality of life for patients, and fund new research that will improve medical outcomes!



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