Dear Friends and Family,
One of my closest friends, Rachel, has a daughter who was diagnosed with Rett Syndrome on her 3rd birthday. I met Rachel about 20 years ago, when we both attended the University of Rhode Island. Rachel is one of the sweetest, nicest people and I am so lucky to have her as a friend. Unfortunately, I do not get to see Rachel and her beautiful family that often, but on June 26th, I will be running the fairfield half marathon along with Rachel to help raise money to find a cure for Rett Syndrome.
Here is alittle something from Rachel.....
On April 22, 2005 our amazing, beautiful, precocious Zoe was born. On April 22, 2008, on her 3rd birthday, our greatest fear was realized. A blood test confirmed that our little Zoe had Rett Syndrome. That day was one of the worst days of our lives. For the past 3 years a cure for Rett Syndrome is the first thing we think about when we wake up in the morning and the last before we go to sleep.
Rett Syndrome is a childhood neurological disorder that affects 1 in every 10,000 girls. Most girls live in wheelchairs, have seizures, almost no purposeful use of their hands, are unable to speak, and have feeding tubes. They live their lives bound and gagged. It is the painful, turn your head, too hard to look at truth.
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 us to imagine how isolated she must feel. Zoe is unable to do any self care and requires 24hr assistance.
As her mom I am constantly amazed at Zoe's strength and perseverance, I know that my goal of running a 1/2 marathon pales in comparison to Zoe's daily life challenges.
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 my 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.