Anniversary

About 1 year ago we got Cata’s diagnosis of Rett Syndrome. We were in shock. We sent a letter out to all of our friends and our family telling them of this horrible syndrome that Cata is living with. This beautiful, intelligent, sweet little girl is locked inside her body with no voice and limited physical abilities. We were instantly surrounded by love and support, both emotional and financial, from a large network of people who have been in our lives throughout the years. The financial support came in the form of donations to Rett Syndrome Research Trust (RSRT) in honor of Catalina. Through that support almost $30,000 has been donated in her name. That is $30,000 closer to a cure!

At around this time we were contacted by Monica Coenraads, the Executive Director of RSRT. She informed us about a “Family Challenge” that RSRT was sponsoring. The family that raised the most money towards research would enjoy a trip to Ireland. We were fortunate to be the lucky winners of this trip. More importantly, the money donated in Cata’s honor paid for over 150 drugs to be tested for Rett Syndrome (see this site for more information). On the anniversary of her diagnosis, Kevin and I just had the most lovely trip to Ireland, staying in a beautiful B&B, the Ashley Park House. It is a gem in the gorgeous countryside. It was a much needed break, and it afforded us the opportunity to reflect on how much work is left to do to find a cure.

There is still no cure for Rett Syndrome, but many researchers are working diligently to find one. We dream of a day that Catalina can talk to us, can feed and dress herself, can play with other children her age. We dream of a day that she does not have 30 hours of therapy a week but rather can enjoy the day however she’d like. We have many dreams for Catalina and we hope to see them come true. Kevin and I are so thankful to have so many wonderful friends and family members who have given us the love and support we have needed to live with Rett Syndrome. In addition to this network, we have found an amazing support network in other Rett families. I am amazed by the dedication Monica (and many others like Ingrid Harding!) has towards the goal of a cure – from this dedication RSRT was born. The website, www.rsrt.org, has the latest information on where the research is and where it has the potential to go if the funds are raised. I was recently struck by a simple fact that someone told me in passing – the Lance Armstrong Foundation was able to raise $62 million through the sale of the yellow rubber bracelets – 62 million dollars! That is just through the bracelet sales. If the researchers working on finding a cure for Catalina and the 4000+ other girls who have Rett had even a fraction of that proceed, I might be writing about a different future for Catalina. So put on your fundraising thinking caps – lets find a way to raise money for Rett Syndrome research and get closer to the possibility of a cure for Catalina! Not only would this help girls with Rett Syndrome, but given the research that has already been done, a cure for Rett Syndrome has the potential to unlock the mystery of other neurologic conditions like Alzheimer’s, Parkinsons, Fragile X and others. In the meantime, while we are being creative in ways to raise our $62 million dollars, an easy way to donate towards more research is by clicking here. Thanks for all of your continued support!