Hi Friends,
I am running my 2nd Disney 10k in honor of my little friend Sophia. Sophia was diagnosed with Rett Syndrome just before her 2nd Birthday. Sophia has the sweetest smile and bright eyes with a contagious laugh you can't help but laugh right along with! Everyone who meets her instantly falls in love with her!
Rett syndrome is a rare non-inherited genetic postnatal neurological disorder that occurs almost exclusively in girls and leads to severe impairments, affecting nearly every aspect of the child’s life: their ability to speak, walk, eat, and even breathe easily. The hallmark of Rett syndrome is near constant repetitive hand movements while awake. Cognitive assessment in children with Rett syndrome is complicated, but we know that they understand far more than they can communicate to us, evidenced by their bright and attentive eyes, and their ability to express a wide spectrum of moods and emotions.
Although Sophia does not have a voice to express her emotions her bright blue eyes tell a story and you can hear that story in her laugh!
Sophia has a twin sister, Olivia, and Rett Syndrome will not be allowed to get in the way of letting Sophia do all the things her sister does! They love the movies, skiing, horseback riding, dance, bike riding, having playdates with friends and going to school. They are now in First Grade, and love spending time with friends and family!
Sophia can be involved in all the things other kids do because of her family, friends, and especially her mother. When you meet Sophia and Olivia's mom, Holly, it won't take but a minute to see what an extraordinary Lady she is! She is a constant presence at the girl's school. She volunteers her time there and helps Sophia's classmates to better understand Sophia. She is a strong lady who has run the Disney Half Marathon 2 times and has signed up for her 3rd. Holly also coordinates fundraisers and helps raise awareness for Rett Syndrome! Holly is a wonderful friend and a fighter against the war with Rett Syndrome. Sophia's family are huge advocates for Sophia. They are always finding ways to keep Sophia involved while spreading awareness of Rett Syndrome in her school and community.
Please help by donating and helping girls with Rett!
RUN TILL SHE CAN !
My sincere thanks to all of you!
Nicole