At just over three years old, Madaleine (Madi) Estepp began to act differently. It started when her parents, Megan and Brandon, noticed her head shaking a lot. Madi then started to lose control of major motor groups and her eyes would move uncontrollably. As any concerned parent, Megan and Brandon quickly seeked help to find out what was wrong. After many failed attempts at different places and months of testing, they ended up at Cincinnati Children’s. Within 24 hours of arriving at the hospital, they found out that Madi had neuroblastoma and Opsoclonus-Myoclonus Syndrome (OMS).
OMS is a very rare autoimmune disease that can cause brain damage and neurological development issues. A month of a therapy similar to dialysis did not work in eliminating the OMS. The doctors then gave Madi a heavy steroid treatment for a week with a 6 month taper, which was thankfully successful. Now at 5 years old, Madi is OMS free, but the worry remains that it could come back if she gets sick.
Madi was referred to the Dayton Chapter of A Special Wish Foundation in 2015 and was recently granted a Special Wish to go to Walt Disney World and Give Kids the World Village. The family spent most of their time between Magic Kingdom and Epcot. Madi made it her mission to go around and get every Disney princess’ autograph for her autograph book.
Madi’s favorite part of the trip was Mickey’s Not-So-Scary Halloween party. Halloween is one of Madi’s favorite holidays, so she took the opportunity to dress up early this year. She put on her Queen Elsa costume and enjoyed meeting all of the spooky Disney characters and experienced the magic of their Halloween parade. She was especially excited to meet Jack and Sally from The Nightmare Before Christmas.
When Madi was not going around seeking her favorite princesses to sign her book, she was using her charm to make friends with staff members at Walt Disney World. Some of them sneaked some free gifts to her. Madi’s charming personality was nothing out of the ordinary. Even before the trip, ASW board member, Chuck Manker said, “When I delivered Madi’s wish and gave them everything they would need for the trip, I was instantly dazzled by her presence. It is no surprise that she charmed her way around the happiest place on Earth.”
Despite many struggles that Madi has faced at such a young age, the family is optimistic about the future. They are thankful that they had this opportunity to bring their family closer and to see a constant smile on Madi’s face. The memories made on this trip will last a lifetime.
A Special Wish Foundation-Dayton Chapter is the only wish granting organization located in the Dayton region. For more information on how you can be part of granting a local child’s wish, go online to www.aspecialwishdayton.org.