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The Warrior Wall

 

YOU inspire us everyday to continue supporting families, educating our community, and fighting Nephrotic Syndrome!

Please enjoy the stories of strength, hope and inspiration these brave warriors have shared with us.

Grayson

Australia

Grayson is our amazing 3 year old NS warrior. He was diagnosed in May 2021 and started a second line of medication in January 2022 after too many relapses. Grayson loves cars, the beach and his baby brother Jai! He won’t let NS stop him from doing what he loves and recently started Kindy! He makes everyone around him smile.

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Lennox

Idaho

In 2021 we noticed Lennox was getting very swollen, after being misdiagnosed as allergies, Lennox was eventually diagnosed with NS. After other treatments, Lennox was put on prednisone and blood pressure medicine for the next 4 months and he is now in remission since January! 

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Macy

Ohio

Macy is a strong 7 year old who was diagnosed with NS at the age of 2. She continues to thrive in life and doesn't let NS hold her back from anything! Macy has a spunky personality & is a bundle of fun!

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Chloe-Ann

United Kingdom

Chloe-anne was diagnosed just before she turned 2. She is frequently relapsing and has tried lots of different medicines. Some have not worked and some only work for a short time. Tacrolimus has worked for 3 years but now started to cause some problems and we are about to change her medication again. Despite this Chloe-anne has remained outgoing and positive. Chloe-anne loves animals and wants to become a vet when she grows up.

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Lauren

Georgia

After a high fever and biopsy, Lauren was diagnosed with NS / FSGS. Although she wouldn't wish FSGS on anyone, Lauren is truly a warrior with a 'can-do' mindset. Her faith is strong, and although things get tough, she never gives up. She wants all other kids in similar situations to know they are not alone and that they will get through the hard times and adjust to their new diet and way of life.

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Advay

India

Advay was diagnosed with Nephrotic Syndrome in 2019. His Mother wrote a book based off of his journey to provide support for others dealing with a similar diagnosis. Her book lets other warriors know they are not alone in their fight, and offers a dose of positivity and playfulness.

 

Find her book JOURNEY of a Little NEPHROTIC SYNDROME WARRIOR on Amazon.

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Clayton

Washington

Clayton is 2 years old and love dinosaurs and gardening! This year is father hosted a birthday fundraising to raise funds to support NSF. Clayton is an inspiration to all in this journey!

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Brandon

Maryland

Brandon is 9 years old and was diagnosed in 2015. He is very creative and enjoys drawing and playing on his iPad. Brandon also has Autism, but despite everything is a happy boy!

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Damien

Colorado

Damien is a smart, funny, resilient 13 year old who had been in foster care since a young age. Early in life, Damien was diagnosed with kidney disease, but lack of a stable home made Damien ineligible for transplant. However, his teacher Finn Lanning took Damien in, and in June 2019 he received his transplant and in June 2020 his adoption became official! Keep up the good work Finn and Damien! 

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William

California

William is our sweet 8 year old boy who is full of life, jokes and laughter and has a room full of legos and barbies! He is constantly making us laugh and has a heart the size of the world! Will was diagnosed with nephrotic syndrome when he was 3. He has relapsed 5 times and has been on Tacrolimus, magnesium, and steroids. We live in Northern California and are beyond thankful to have the Nephrotic Syndrome Foundation in our lives!

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Savanna

Pennsylvania

Savanna is 12 years old and has Nephrotic Syndrome. Savanna and her family are planning to host their 2nd annual BBQ event to raise funds for The Nephrotic Syndrome Foundation! Savanna is a ROCK STAR!

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Dylan

California

Dylan was diagnosed right after his 5th Birthday. He loves Cars, Fire Trucks, and Soccer. He also loves to ride his bike to keep up with his sister, who is 7 years old. He also enjoys going on adventures with his dog Louie! 

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Joshua

Pennsylvania

Joshua is 2 years old and was diagnosed with Nephrotic Syndrome as a result of Minimal Change Disease. Joshua LOVES cars, and each year he hosts an awesome car show filled with vintage vehicles to raise money to support NSF's programs! 

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Riley

Kentucky

Riley was 2 years old when he was diagnosed. He had both of his kidneys taken out and was put on dialysis for 2 years until he received a transplant. He loves Star Wars, Minecraft, and all things Outer Space. Riley you are a star!

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Ivy

Indiana

Ivy was diagnosed with Nephrotic Syndrome Thanksgiving of 2015. She has a huge heart, a smile to warm everyone’s heart, she befriends anyone she meets, a fighter against NS, and can tell you more about the kidneys and her condition than most adults.

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Brantley

California

Brantley is 6 years old and was diagnosed with IgM Nephropathy in 2018. He loves his Backpack of Hope! As soon as he received his gift he was so excited to wear it to school! We are so excited to have him as part of our NSF family!

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Alyssa

California

Alyssa was diagnosed with FSGS on March 3, 2016. She has tried prednisone, tacrolimus, enalaphril,  lipidpheresis, losartan, rituximab, cellcept. She is now doing a third round of lipidpheresis with IV high dose steroids and is back on tacrolimus. 

We are still looking for something to work. She is a true warrior and an absolute inspiration!

Rivers

Oklahoma

Rivers is 17 years old and is in her 2nd year of Nursing classes. She loves animals and helping her family run their Animal Sanctuary. She also loves the ocean, beach, and spreading awareness about Nephrotic Syndrome. She is part of NSF's Peer Team too!

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Daraida

North Carolina

Daraida was diagnosed with Nephrotic Syndrome at 2 years old. She loves to cook and bake. One day she hopes to find a cure for her disease and spread awareness. Daraida keeps a smile on her face, even through the toughest days. She is a true WARRIOR! 

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Gage

Kentucky

NSF provided a Direct Patient Grant to the Howell family in support of treatment for their 10 year old son, Gage, hospitalized for nephrotic syndrome. Gage has been battling an infection which commonly causes rejection and is facing multiple treatments and infusions. The family lives in Kentucky, 300 miles from the hospital where their son is treated.

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Jonah

Texas

Jonah is an incredibly inspiring Nephrotic Syndrome Warrior and we will always hold him in our hearts. He fought very hard and always had a strong support system from his wonderful family and friends, but sadly he lost his battle with NS in 2021. We are honored to have Jonah's family as members of our community and send them all our love and support.

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Warrior

Global!

Stay tuned for more amazing Warriors and stories from around the world!

INTERESTED IN BEING FEATURED?

We want to see YOU and share your story!

Send a picture and a few words about your child along with approval to add them to our Warrior Wall to patientstories@nephroticsyndromefoundation.org