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| OUR MISSION: Our mission is to find
the cure for Rett Syndrome.
The Erika Van Giesen
Foundation's beliefs and purposes are: ABOUT RETT SYNDROME: Rett Syndrome is a debilitating neurological disorder diagnosed almost exclusively in females. Children with Rett Syndrome appear to develop normally until 6 to 18 months of age when they enter a period of regression, losing speech and motor skills. Most develop repetitive hand movements, irregular breathing patterns, seizures and extreme motor control problems. Rett leaves its victims profoundly disabled, requiring maximum assistance with every aspect of daily living. Though Rett Syndrome may affect males, few are known to survive pregnancy. There is no known cure. Our best hope is through research to understand and develop an effective therapy to find the cure.
Erika May Van Giesen May
2009 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 Rett Syndrome Fight. The Erika's Dream III event typified the commitment of the Erika's Dream support team in it's ongoing effort to support our cause as well as the Van Giesen family. The event occurred within the backdrop of the worst economic downturn in over three quarters in a century. All expectations were off as our guest count dropped to its lowest level since our beginning in 2005. However, despite the rain and a mid live auction power failure the event raised more money than we could have ever dreamed possible. This was in no small part due to the inspiring speech given by Dick Grace of Grace Family Vineyards. This amazing speech, given in relative darkness, was heard by all as a result of a wonderul supporter of Erika, by the name of Sy Richardson. Sy swung into action the moment the lights went out and ran an extension cord out of the building through the rain to his van for power. The event must go on, and so it did! The Fund a Need that followed was the best in our history. What can one say to efforts like those? The Van Giesen family continues to fight the Rett monster and through the many bouts of tears and sadness glimmers of hope have arisen. Erika's disastrous school situation has been completely rectified due to a change in teachers. We were approved for over $24,000 in equipment in a share pay of Blue Cross, Medical and our regional center. This equipment has greatly aided Erika as well as our daily lives. Erika's sisters continue to be amazing supporters and the best sisters any parents could ever ask for. Brianna wrote a poem that typifies both their dreams and fears for their sister. Please see the tab at the top of the page to read this remarkable poem selected by two major international Rett Syndrome organizations for publication.
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