Make a Difference

Thank you for choosing to Make a Difference for children living with Rett syndrome, their families, and their support systems. Change happens when you share your time, talents, and dollars. We are here to support your chosen approach to giving and, when needed, provide guidance through the options. These options include making a personal donation; hosting, attending, or fundraising as part of an event; or spreading awareness in your community and beyond. We promise your involvement will have a positive impact on the children and their families living with Rett syndrome and on you.

Here is a story of Curt Heide, a man who had just recently learned about Rett syndrome and found a friend for life. Now he does everything he can to raise funds to help children with Rett syndrome.

I wanted to tell you a little about how I got involved. I lost both of my parents this year. My mom first, she lived here in Iowa. Then my Dad passed in June. He lived in Kansas. When I was there for his funeral and all, I was on the deck of my folks’ house with my nephew and sister in law. A young lady came out to talk with my sister-in-law and she was holding her child. I could tell right away that it was a special needs child. The little girl’s name is Kate. When Kate's mom went to leave, I said goodbye and figured that would be that, haha. As her mom went to kind of give me a one armed hug, Kate reached for me. I was really unsure, but I picked her up. She flashed those baby blue eyes at me and then gave me a great big smile. I told her how beautiful she was and then she just started giving me kisses. Her mom in the background, saying: "Kate! Kate! What are you doing?" Then she laid her head on my chest and it was all over for me. This little girl had stolen my heart in a matter of moments.

I went to see Kate every day while I was there. I have gone back to visit every month since then. And we have become like best buds. When we are together, we are pretty much inseparable. She has helped to heal my heart and I owe her a debt I can never repay. Her mom and I laugh about it now. It was like she knew and said "you need someone to love and here I am, love me."

I write to her at least once a week. There is nothing I wouldn't do for her.

Since then I've gotten involved a little. I do some photography and took pictures at strolls and a Rett Awareness event in October. And will help any way I can in the future.

 - Curt Heide

We hope you will consider helping, too. Only with your support can we make Kate’s life, and the lives of thousands of others with Rett syndrome, easier. Learn more about the many ways you can Make a Difference by exploring the menu on the left.