Courtney Robins via Crowdrise
May 22, 2011
Dear Friends and Family,
This year I have decided to challenge myself and run the Stratton Faxon Fairfield Road Race. It is a half marathon (13 miles) that takes place on 6/26/11 in Fairfield, CT. This is going to be the longest and most challenging run that i have ever done. This is such a big event for me that I have decided to make it even more meaningful and participate in the fundraising for "Team Zoe" and the Rett Foundation.
This is my dear family friend's daughter, Zoe. She unfortunately has a disorder called Rett Syndrome.
Rett Syndrome is a childhood neurological disorder that affects 1 in every 10,000 girls. Rett syndrome is a disorder of the nervous system that leads to developmental reversals, especially in the areas of expressive language and hand use. Rett syndrome occurs almost exclusively in girls. Most girls live in wheelchairs, have seizures, almost no purposeful use of their hands, are unable to speak, and have feeding tubes.
Zoe was born on April 22, 2005. As a baby, Zoe was so beautiful with the best personality. She always wanted to be around people and to be loved by everyone. Zoe had just learned to walk and say a few words, then her parents noticed that her development had begun to slow down. On April 22, 2008, a blood test confirmed that little Zoe had Rett Syndrome.
Rett often strikes just after the child has learned to walk and say a few words, and begins to drag their development backwards. There are many symptoms of Rett Syndrome including:
- Regression, including loss of speech, motor control and functional hand use
- Autonomic instability and sleep disturbances
- Autistic behaviors and sensory issues
- Impaired cardiac, circulatory and digestive functions
- Parkinsonian tremors
- Many varieties of seizures, often untreatable
- Orthopedic problems including scoliosis and osteopenia
Zoe is considered one of the 'lucky ones". She currently walks, and has some use of her hands. Her biggest challenge is that she is unable to speak. For someone who is 6 years old this is a tremendous handicap. Zoe cannot express what she is feeling, cannot tell us when she is in pain, what she wants to eat, drink, play with or watch on tv. It pains me to imagine how isolated she must feel. Zoe is unable to do any self care and requires 24hr assistance.
So now for some good news.....Rett Syndrome has been reversed in a mouse model. Scientists are making amazing strides in their research and we truly believe Rett Syndrome will become the first reversible neurological disorder. Rett Syndrome is grossly underfunded. The charity I am running for is Rett Syndrome Research Trust - www.RSRT.org. 96% of every dollar donated goes directly towards researching a cure for Zoe and the thousands of other girls who suffer from Rett Syndrome each day.
Many thanks for your support and don’t forget to forward this to anyone who might want to support Team Zoe.