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.

March 14, 2025

Meet The Dunbar Family

We are so blessed to have Elle in our lives. She has a funny and sassy personality, and reminds us to love and laugh every day. But there are also a lot of unknowns and fears as we navigate how to best support her speech challenges, developmental delays, and weaker tone and strength. Every doctor we see has to research Elle’s syndrome and most days we are paving our own path.

December 8, 2024

Meet The Green Family

For our family, having a rare disease has been extremely isolating as many don’t understand what we are going through. We were hoping to find a sense of community and a support group to lean on, which is why a family friend introduced us to WARD’S Foundation.‍

December 8, 2024

Meet The Sundaresh Family

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

Meet The Norman Family

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

Meet The Baum Family

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

Meet The Wingate Family

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

Meet The Hohne Family

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).

March 25, 2024

Meet The Blickley Family

Even with all the struggles, Hayden has changed our lives in ways that we couldn’t have ever imagined.

January 29, 2024

Meet The Roetting Family

After years of fertility treatments, miscarriages and medical complications with pregnancy, we assumed our struggles were over after Rosie was born.

November 21, 2023

Meet The Huff Family

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.

February 17, 2023

Meet The Grenier Family

William’s difficult journey began months before his birth; tests early in the first trimester showed signs of concern and increased throughout the pregnancy.

Raise awareness

Share your story

By telling your story, you provide support to other families in similar situations and help us raise awareness to advance rare disease support. If you would like to share your rare disease journey, please contact us at forward@wardsfoundation.com.
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