Our day started out thinking that Finn had been bitten by some type of bug and was having an allergic reaction. His face was swelling up a lot above his eyes. We took him to the doctor who also thought it was the some type of allergic reaction. A couple of days later, Finn was becoming swollen all over his body. We returned to the doctor's office and he looked all over for some type of bite. There was none. We were about to walk out without any answers when the doctor said, can he urinate in a cup. We went back into a room and waited for the results of the urine. The doctor came in and said Finn has Nephrotic Syndrome. My mouth fell to the floor. We were there for an allergic reaction, not a syndrome. 

Less than a week later we were talking to a Nephrologist at Nemours. He told us the kidneys are not working correctly and that Nephrotic Syndrome presents and acts differently in each person. Finn had to stay in the hospital for days to get the protein under control. When he was able to be released we were told that he must come back once a week for 8 weeks to get transfusions. We would drive from NJ to DE on Friday morning, Finn would cry the whole way there. There is something that breaks in you when you watch your child in so much pain that he is literally screaming and there is nothing you can do. We would be released the following day in the early evening. 

Fast forward, and here were are over one year with Finn in remission. He must go 4 times a year for his Nephrologist visit. We are reminded every time we go that it is not a matter of IF but WHEN he will relapse. I choose to believe that God will provide us with a miracle and keep Finn healthy. If not, we will continue to be positive about this kidney disease. FInn has had to endure more in his 8 years of life than most people ever have to go through medically. He did all of it with a happy heart and a smile. Even when he was scared and hurting, he held on to his dog stuffed animal named Bravey and did everything he needed to. 

Rare kidney diseases are wild to navigate. We had never heard of Nephrotic Syndrome until the day Finn was diagnosed. There was some information that we found online but we still felt confused. We came across the Nephrotic Syndrome Foundation and they were full of resources. They have sent Finn a Nephrotic Syndrome Foundation backpack of hope, a thermometer, and other things along the way. He always gets excited when he sees a package from them. This organization has literally been such a blessing to us. We want to be able to give back to them in any way we can. Please consider donating, every single dollar counts.

Our Mission:  The Nephrotic Syndrome Foundation is a non-profit organization supporting those diagnosed with Nephrotic Syndrome, their families, and the ongoing search for a cure.

Background:  Nephrotic Syndrome is a serious and rare auto-immune disease that attacks the kidneys causing them to shut down. There is no known cause or cure. Treatments are extremely limited and consist primarily of steroids and cancer and transplant medications. Many patients are children who spend a major part of their life in and out of the hospital, trying to find a treatment that keeps them in remission while managing the side effects. Receiving this diagnosis is life-changing. It can take the breath out of any parent or child who finds themselves in this situation. Our goal at NSF is to meet each family and child in these tough times and lift each one up as best we can by providing financial and emotional support to help them weather the times to better health, acceptance, and adjustment.

Join Us: Through our patient programs, we are committed to being a light to young warriors, but we need your help. We are a community of young warriors and families facing something we could never have imagined. TOGETHER, we are making an impact. Thank you to all of the beautiful people, businesses and organizations who make this possible. You are changing the world. ❤️

Our Work:  NSF offers eight programs to uphold our mission and support children diagnosed with this disease and their families. Those programs include:

• Backpacks of Hope - A backpack of comfort items and medical supplies provided to newly diagnosed patients or those who have been battling in this fight without support (each valued at over $300).
• Finding Health Series  - An ongoing series offering content, education and wellness segments, sessions and seminars on topics related to the NS journey.
• NSF’s Peer Team -  A group of older teens and young adults with NS who support younger patients in their journey.
• Thermometer Program - A hospital-grade thermometer provided to patient families ($300+ value).
• Camp NSF - An annual camp, 100% free, for patients, siblings & families that takes place in Livermore, CA.
• Direct Patient Grants - Support for costs related to caring for a child with NS.
• Little Angels - An unsolicited care package program for young warriors.
• Podcast -  Inspirational and authentic stories of warriors living with Nephrotic Syndrome.

Thank you for choosing to be the light for those battling Nephrotic Syndrome.

Learn more by visiting our website: www.nephroticsyndromefoundation.org
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​**The Nephrotic Syndrome Foundation is a fiscally sponsored project by Social Good Fund, a California non-profit corporation and registered 501(c)(3) organization, Tax ID (EIN) 46-1323531.