Hilda Gonzalez via Crowdrise
May 29, 2011
roxanne fales wrote -
Hello, my name is Talia Rose Fales. I was born on July 11, 2000 in Englewood, NJ. My friends call me Tali and my Mom calls me her angel.
At first, Doctors were not concerned. I walked, talked, ate by myself,played with toys, and then one day it all changed. My mom & dad were very worried.They took me to Don Imus Children's Hospital In Hackensack, NJ for further testing. Which included Genetic testing for rare diseases. In the meantime, I was referred to the Bergen County Early Intervention Program for speech,occupational, and physical therapy.
Then, on January 4, 2002, I was diagnosed with Rett Syndrome. My family was in the state of shock, because at first the Genetics counselors assured my parents that it was most probably a Chemical inbalance because I did not have any clinical features that the Rett girls have and all the others tests came back fine. My mom & dad were overwhelmed with anger and sadness. And to this day , they are filled with despair because there is no cure. This condition strikes in 1 in 10,000 girls. It is not a Hereditary disease. It is a 99 % sporadic mutation. A missing protein called MECP2 is what causes Rett Syndrome. WHY did this happen to me ? My parents had a very difficult time understanding how my condition would affect all of our lives. Since that time, my family has grown accustomed to my differences and they have come to see me as a beautiful blessing from God.
I have many Doctors and Therapist who help me with the medical conditions related to my diagnosis. Because of my medical needs I have a nurse who comes to my home after school and helps me because I have mutliple needs while my mom tends to my twin sisters. I love my nurse and she has become a very important part in our family’s lives.
I have a wheelchair and I need a lot of help with all my daily activities. I am able to sit on my own,stand and walk with assistance. I receive physical therapy ,speech, and occupational each day at school. I am able to speak every now and them. I used to be able to talk before Rett syndrome took its full force. However, I am able to communicate effectively via eye gaze. I was tested at the Rett Montifiore Specialty Hospital by Dr. Sasha. She was amazed how very smart I am. My Mom is always proud of me. She was especially proud when Dr. Sasha told her that I was very advanced and tested in the top 3 of Rett Syndrome Girls Worldwide. Because of my cognitive abilities, I was approved to use a special computer name " Tobii Eye Track" . It is a great computer and I love to use it. I also have a great adapted computer that " Make a Wish Foundation" gave me when I was 5 years old when my family and I lived in Florida.. My family understands what I need and want most of the time, but it is a lot harder with people who don’t know me as well.
I have 2 younger twin sisters named Tiffany & Tiara. They help me a lot. I love to play with them. We also have a great time playing Wii and making arts & crafts. My little sister Tiara loves to make funny faces and always like to read with me. My sisters likes to play music and sing with me. I love to play the piano. I love my family very much. I am a very lucky little girl.. I am a happy girl most of the time and enjoy being around people. Mom calls me a social butterfly. Sometimes I just like to people watch. And I also love Justin Bieber, Mike Posner , Selena Gomez, Kesha, Bruno Mars and my favorite shows are ICarly and Spongebob.
Our family has lots of wonderful friends who like to spend time with us. We go to many activities and one of my favorites is Broadway Shows. I also enjoy riding my special bicycle,baking with my mom, going swimming & water park rides with my sisters and family.
Miracles can happen and my family prays each day for a miracle to happen for me and all my sisters with Rett Syndrome.
.....Please watch this video" The Hero's Path". A special message by Julia Roberts .