On June 26th, I'm running a half marathon to raise awareness about Rett Syndrome and to raise funds for the Rett Syndrome Research Trust as they work to reverse Rett. Below is what Zoe's mom, Rachel Rothschild, has written about Zoe, Rett, and this race, and I can't possibly describe this challenge any better than she has.
I hope you will support me as I tackle 13.2 miles, but more importantly, support Zoe and the Rett Syndrome Research Trust in the fight to reverse Rett.
Rachel Rothschild wrote -
Dear Friends and Family,
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.