Daphne's Defenders is a team dedicated to helping Daphne through her battle with Rett Syndrome and to raise awareness. We are walking on Sunday May 17 in the Strollathon, Rettsyndrome.org’s signature fundraising and awareness event, to raise money for essential research of effective treatments and to find a cure for Rett syndrome. This casual stroll has a fun and energetic festival atmosphere.
Rett syndrome is a genetic neurological disorder occurring almost exclusively in females and becoming apparent after 6-18 months of early normal development. The resulting regression leads to lifelong impairments, including lost speech, seizures, scoliosis, irregular breathing patterns, and more than half of the children and women lose the ability to walk. Those diagnosed with Rett syndrome require maximum assistance with basic daily activities.
On June 5th, 2016 our sweet Daphne was born and welcomed by Mom, Dad, and sister Lorelei. Daphne soon began missing key developmental milestones and began experiencing medical issues ranging from sever acid reflux, to hand wringing, to seizures. After seeing many medical specialists, Daphne was diagnosed in March 2019 with a rare genetic disease called Rett Syndrome. Rett Syndrome has left Daphne unable to walk and talk and she requires help with the most basic daily tasks such as feeding herself and expressing her wants and needs. The brutal nature of Rett Syndrome will mean lifelong struggles and the fear of the next regression stage that could strip Daphne of skills she has managed to retain thus far.
Although this was a life changing diagnosis, Daphne has a tremendous support group from an incredibly involved and passionate group of family and friends to a terrific team of therapists, teachers, and doctors. Although still young, Daphne is a warrior and we embrace every day we get to hear her laugh and see her bright smile. Daphne loves getting pushed in her swing, splashing around in the pool and lake, and watching her favorite cartoon shows with her big sister. However, it breaks our hearts to think that Daphne cannot run through the backyard with her sister, learn to ride a bike, and say I love you.
Rett Syndrome is a devastating disorder but there is hope. A tremendous amount of research has been done to reverse Rett Syndrome. This research can only continue with your help and generosity. Please consider donating and joining Daphne and all of us for the charity walk to help support a cure for Daphne and all the other girls impacted by this terrible disorder.
Your donation will help fund important research and family support. This cause is very important to me and I appreciate your help as we fight for a cure for Rett syndrome!
Please join us or donate to our efforts to support Rettsyndrome.org in finding a cure! Your help is our hope!
Date: Sunday, May 17, 2020
Location: Drake Sport Park, 6801 Drake Rd, West Bloomfield Township, MI 48322
Registration: 10:00am, Stroll: 11:00am