When you watch a new house under construction, you anticipate confidently that one day the builder will indeed finish it to completion. With the right plans, and the adequate funding, there’s an expectation that the project will succeed. This same philosophy describes the passionate certainty that Bridget MacDonald and other families like hers feel about curing the consuming and debilitating disorder that is known as Rett Syndrome.
Bridget MacDonald is the Rochester mom of beautiful Annie, who lives everyday with Rett Syndrome. Bridget describes Rett as a “spontaneous, genetic neurological disorder that affects girls almost exclusively.” Her daughter Annie was born healthy and developed normally until about 12 months old when she suddenly regressed. She lost all hand function, ability to move around, and gone was every word she spoke. Girls like Annie remain cognitively age appropriate, however they become trapped in bodies that are no longer able to function properly. These precious girls require 24-hour care for the rest of their lives. Rett Syndrome has the symptoms of autism, cerebral palsy, Parkinson’s, epilepsy, and anxiety disorder all wrapped into one disease.
But despite all of the immense challenges that families like Annie’s face, they still are bursting with faith that Rett Syndrome will be cured in their own daughter’s lifetime. Since being defined as a specific diagnosis in the early 1980s, the research for Rett has exploded with incredibly positive findings. In 1999, the gene was discovered that causes Rett Syndrome. The detection revealed it to be caused by a single gene, which gave those affected hope, as this increases the likelihood of deriving a cure. Furthermore, in 2007, a laboratory study showed the ability to reverse Rett Syndrome in mice, providing immeasurable optimism that a cure in fact is close to a reality.
Just like a homebuilder needs resources to finish new construction, researchers are in desperate need of funding to translate their findings into a miracle for the girls who have been affected by Rett Syndrome. One way that you can be a part of this miracle is happening this Sunday at the 4th Annual Quest for a Cure Walkathon. There are only a handful of girls locally who are living with Rett Syndrome, and they will be ecstatic to share with you their hope and their hearts at this incredible event that is fully funded by donor gifts. It is a wonderful experience for the whole family. In addition to the walk, there will be free food, games, prizes, and a raffle that is famous for being generous to those that attend. Every dollar raised goes toward Rett Syndrome research and will continue to provide these girls and their families with a promising future.
For more information on Sunday’s event, happening at Inglenook Park in Southfield, Michigan, please visit http://www.questforacure.net. If you would like to know more about the Rett Syndrome research that will be benefitted by the Quest for a Cure Walkathon, please visit http://www.reverserett.org.
About Heidi Morris