Family
stories
While the diseases are distinct, the struggles of a rare disease diagnosis are remarkably similar. Read the stories of families who have walked this road.
October 13, 2025
We were given a horrible diagnosis, but had the absolute best outcome.
March 14, 2025
December 8, 2024
December 8, 2024
Satya has had such a positive effect on our family and can brighten up the hardest day. We do not want his diagnosis to define or limit his potential. Every day our goal is to make him happy and raise him to be confident and independent.
September 9, 2024
Since that first day at Levine Children’s Hospital, we have coordinated his protein intake, daily medications, and the variety of specialists that are required to manage a rare disease. Above the daily management, there are so many more challenges. All of this is why we want to support WARD’S Foundation.
July 1, 2024
WHS is so rare that Viviana’s doctors had not seen a case in over 10 years. We were told that she may never walk or talk, and that she will be severely delayed. She is working hard to prove those odds wrong everyday.
June 19, 2024
I can say, with incredible passion and confidence, a complex care center is an essential part of the journey of a child with a rare disease. It is vital to the health and wellbeing of not only the child, but the entire family.
March 26, 2024
The Complex Care Team and WARD’S Foundation have been vital to my son’s care and my adjustment in Holland (if you know, you know). They provide us with scheduling help, guidance in medical decisions, social work help, and above all else, support. Navigating the needs of any baby, but especially a rare baby, can be a difficult, confusing, and isolating road. The Team and the Foundation make us feel seen, loved, and cared for. I know that my sweet August matters to them, and we are honored to be a testament of what it means to be rare. We love you Ward (and your foundation!).
March 25, 2025
While we initially thought our dreams for Hayden were crushed, we still have the same dreams for her as we did when she was born. They are simple. We hope that she is happy and reaches her full potential – whatever that is. We are doing whatever we can to help her achieve those dreams.
January 29, 2024
It was an ultra-rare genetic disease called GMPPA-CDG. Rosie was only the 22nd case ever documented with this disease in the entire world. No treatments exist, and there is no standard plan of care. It was one of our darkest days, but it also lead us to hope. Hope that we could navigate these uncharted waters empowered by knowledge, a diagnosis. A diagnosis that would be the starting point to guiding our medical care team to give Rosie the healthiest life possible. A diagnosis that has lead our non-profit bloom for a cure’s research to find 6 existing drugs that could be used to treat GMPPA-CDG. But it all starts with a diagnosis and the support of a medical home, exactly what WARD’S Foundation is building right here in Charlotte.
March 14, 2025
While we weren’t sure what Nora had at the time, her multitude of symptoms across specialties fit squarely into the mission of Ward’s Foundation. Through Trey, we were introduced to Dr. Chadha (pulmonologist) and Dr. Ferren (geneticist). We finally began to get answers about Nora’s genetic condition and we are so appreciative of the entire team at Levine Children’s Speciality Clinics.
March 14, 2025
By partnering with WARD’S Foundation, our hope is for families in Charlotte and the Carolinas to have access to that support without having to leave home, minimizing the extra stresses that accompany a rare disease diagnosis.
Raise awareness
Share your story
