Three years ago, everything changed for Dawn and Steve Patafie. In 2016, their daughter, Peyton, was diagnosed with Nephrotic Syndrome.
“The doctors told us that her condition was extremely rare,” Dawn recalled.
Peyton responded to steroids on the first try, which ultimately put her into remission for a year and a half.
“At that time, I thought Nephrotic Syndrome was a thing of our past. I never imagine it could slip back into our lives,” Dawn mentioned.
But unfortunately, the Patafie’s nightmare came to life and in February 2018, Peyton experienced her first relapse. Afterwards, she was on and off steroids for over a year.
“It was during those countless relapses that I started to feel helpless. One night when I was unable to sleep, I came across a Facebook group for parents who have children with Nephrotic Syndrome. It was through this group that I learned about NephCure,” Dawn said.
Peyton’s condition is now managed with cyclosporine.
“My daughter was extremely lucky to respond to steroids,” Dawn acknowledged.
Dawn and her husband, Steve, turned their helplessness into a plan of action. The two are now giving back in a big way, dedicating their time and energy to the fight against kidney disease.
Since Peyton and her brother, Rocky, both enjoy playing soccer, the Patafie’s put together the North West Arkansas (NWAR) NephCure Soccer Club. The team of young kidney warriors participate in local soccer tournaments to raise awareness and critical funds for NephCure Kidney International.
“We put the NephCure team together so the kids could continue to play [soccer] in the summer with their friends, while spreading awareness about Nephrotic Syndrome. It seemed like a great way to have the kids involved in raising awareness while doing something they love as well. We educated everyone that joined about NephCure and explained to them why the organization was important to us,” Dawn said.
Her husband Steve added, “It was an awesome feeling listening to 6 and 7-year-olds cheer ‘Go Team NephCure,’ on the sidelines. The kids and parents were all extremely supportive of our cause.”
In addition to managing the NWAR NephCure Soccer Club, Dawn is Arkansas’ patient engagement lead for other parents whose children have a similar diagnosis. That responsibility came along with the opportunity to attend NephCure’s Leadership Summit this past March.
“Since attending the Leadership Summit, I no longer feel alone as we deal with Peyton’s Nephrotic Syndrome. Meeting other parents that are going through the same things with their children was so comforting. I now have a network of people to reach out to that I didn’t even know existed,” she said.
Dawn is also the founder of a Facebook group called ‘Arkansas Parents of Children with Nephrotic Syndrome’ where she establishes a local support system. She even met up with two of the moms in the group this summer.
“We had a blast having our daughters meet. Both moms told me that my daughter was the first person that their child has met that also has Nephrotic Syndrome. This is also the case for my daughter,” Dawn mentioned.
On top of the NWAR soccer team and the NephCure leadership role, Dawn and her family is hoping to start a new NephCure walk in Northwest Arkansas in the spring of 2020.
“I hope that the Nephrotic Syndrome families leave our event feeling a sense of support and community that they may have not realized was around. I hope to spread awareness in our area to people that have never heard of the disease or NephCure before,” Dawn said.
The Patafie’s selflessness incredibly enough doesn’t stop there, they are also NephCure Champions. The program is part of our network of grassroots community fundraisers, who fundraise locally and virtually to help support NephCure’s mission of finding better treatments for protein spilling kidney diseases. You can find their web page at give.nephcure.org/Champions.
Many thanks to Dawn, Steve, Peyton, and Rocky Patafie for their tireless efforts in support of our community.