Erika May Van Giesen
Born September 18, 2002
Diagnosed April 15, 2004

Dear friends and supporters of the Erika Van Giesen Foundation,

Erika is now eight years old and still struggling with the insidious monster that is Rett Syndrome. Our family has been riding this up and down rollercoaster with Erika still managing to remain as positive as possible. We had many hospital stays and plenty of heartache over the last year. But there were small victories as well. We recently installed a tracking system throughout our home in order to move Erika around with much more ease than before.

Erika, our beautiful child, continues to inspire her family and friends to do amazing things in our lifelong effort to raise hope, awareness and funding for our never-ending fight against Rett Syndrome. As our fight against Rett Syndrome continued through the many bundles of tears and sadness, glimmers of hope still shown through. Erika’s two sisters continue to be remarkable supporters as they travel through life becoming vocal advocates for their silent sibling. Brianna, one of Erika’s sisters wrote a poem that characterizes both of their dreams and fears for their sister Erika. Please see the link above to read the profound words that Brianna has shared and that has been translated into many languages around the world. Megan, Erika’s other sister, is always there to assist with her substantial daily needs.

Children’s Hospital Oakland and the Katie’s Clinic are the vital link that quite literally provides the glue that holds nearly 500 families together. They provide the lifeline of friendship and understanding in those devastating hours after the tragic diagnosis as well as the medical care and counseling to keep the families going in their fight. Please lend us your support we so desperately need.

Thank you,

The Van Giesen Family and Katie Hamilton Shaffer