Erika May Van Giesen
Born September 2002
Diagnosed April 2004
Dear friends and supporters of the Erika Van Giesen Foundation,
Erika, our beautiful Daughter, was diagnosed with Rett Syndrome in April of 2004. Since then she has inspired her family and friends to do amazing things in our lifelong effort to raise hope, awareness and funding in this ever-changing fight against Rett Syndrome. Through all the tears and sadness a glimmer of hope still shines 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 shares both their dreams and fears for their sister. Brianna’s profound words were translated into many languages around the world and were published in two major International Rett Organization publications. Megan, Erika’s other sister, is always there to help with her substantial daily needs.
Erika is now eight years old and still struggling with the insidious monster that is Rett Syndrome. Our family has ridden this up and down roller-coaster with Erika always managing to stay as positive as possible. We have had many hospital stays and plenty of heartache over the last few years, but there have been small victories as well. We recently installed a tracking system throughout our home to move Erika around with much more ease than before.
Children’s Hospital Oakland and Katie’s Clinic for Rett Syndrome are the vital links that offer the glue, education and support that hold 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