Macy was diagnosed with Nephrotic Syndrome at the age of 2. I will never forget the morning that it happened; face swollen so badly that she could barely open her eyes. I, of course, got online and researched her symptoms. When we rushed her to the doctors office, they said she was having an allergic reaction and that Nephrotic Syndrome was too rare for that to be the case. However, mom knows best, and we went for a second opinion. It was the next day that we found ourselves at Nationwide Children's Hospital in Columbus, Ohio where Macy would begin her long journey with Nephrotic Syndrome. I remember the steroids making her very angry and very hungry. She was only 2 so she didn't understand what was going on and why she couldn't eat foods that she was used to eating. I remember all the different medications that were experimented; including rituximab infusions which we later found gave her serum sickness. Macy has been classified as having "difficult to treat Nephrotic Syndrome". Any common cold, any childhood vaccinations; would throw Macy into a relapse. By the grace of God, Macy has been relapse free for almost a year now, even despite getting Covid-19 this past fall. She struggles with headaches and stomach/body aches most days. She still takes her immunosuppressant twice a day; but the plan is for Macy to be off medication this summer for the first time in almost 6 years to see how her body will handle it. When the pandemic hit, I had to quit my full time job to stay home with Macy so she could do online school. We were so afraid of how covid could affect her due to her underlying illness so we decided that working from home would be best. We started our dog breeding program "Forever Family Puppies LLC" knowing that we wanted to give proceeds from each puppy to an organization just like The Nephrotic Syndrome Foundation. We are so thankful to have found this organization & feel very blessed that we can give back!!
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.
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).
NSF’s 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.