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roxanne fales' Fundraiser:

Triumph for Talia

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BENEFITING: Rett Syndrome Research Trust

EVENT DATE: Dec 31, 2013

roxanne fales

THE STORY:

              Hello, my name is Talia Rose Fales. I was born on July 11, 2000 in Englewood, NJ. My friends call me Tali, My Mom calls me her angel and my Dad calls me MooCoo.

              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 officially 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 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 Therapists who help me with the medical conditions related to my diagnosis.  I  also have a nurse who comes to my home after school and helps me,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. My handicap is physical not mental. I understand everything you say and due to apraxia my responses may sometimes be delayed, be patient and you will see that I am like other children in so many ways.. 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 named " Tobii Eye Track"which is now my voice and I can learn and communicate quite efficiently.. It is a great computer and I love to use it. 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 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 too. 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, Victorious, Big time Rush,Mike Posner , Selena Gomez, Kesha, Bruno Mars, Fergie and my favorite shows are ICarly ,Drake & Josh,H2o,Victorius, Fairly Oddparents and Spongebob. I  also enjoy many other activities that include going to Broadway shows,riding my special bike,swimming, playing Wii with my friends,baking with my mom , and water park rides.

                  My Mom & my family pray every day and hope that they find a cure real fast.  I do have some great news to share with you!.....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 benefits  "The Rett Syndrome Research Trust - www.RSRT.org. 96% of every dollar donated goes directly towards researching a cure for me and the thousands of other girls who suffer from Rett Syndrome each day.

   I need your support to Make this Miracle Happen! Thank you!

       

 

 

  

DONATE

To This Fundraiser

$665

MONEY RAISED
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  • Sandy

    $20

  • Anonymous

    $40

  • Hilda Gonzalez

    $50

  • Martha Patricia Moreau

    $100

  • Richelieu

    $15

  • O'Sullivan Family

    $30

  • michele stella

    $50

  • Iraida O'Callaghan

     

  • Adrian Esteban

    $30

  • Maritza Fundora

    $25

  • Anonymous

     

  • Carlos Banegas

    $50

  • Martinez Family

    $50

  • David Fales

    $100

  • Jacqueline A Iglesias

    $40

  • Talia's Treat Chocolate Bar

    $25

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13% Raised of $5,000 Goal

Fundraise for this Campaign

The Team: $665 TOTAL RAISED SO FAR

Fundraiser Title

roxanne fales

Amount Raised

$665

 

13% Raised of $5,000 Goal

Fundraiser Title

Hilda Gonzalez

Amount Raised

$0

Fundraiser Title

Martha Patricia Moreau

Amount Raised

$0

Fundraiser Title

David Fales

Amount Raised

$0

Donor Comments

Talia's Treat Chocolate Bar

Talia's Treat Chocolate Bar

DONATION: $25

5 years ago

Jacqueline A Iglesias

Jacqueline A Iglesias

DONATION: $40

Love you Talia...... Rox you're a true warrior for your daughter & all the other angels touched by Rett's....... God Bless you!! 5 years ago

David Fales

David Fales

DONATION: $100

I Love You My MooCoo 5 years ago

Martinez Family

Martinez Family

DONATION: $50

Rock em Talia! 5 years ago

Carlos Banegas

Carlos Banegas

DONATION: $50

Que dios te bendiga con una cura! 5 years ago

Anonymous

ANONYMOUS

5 years ago

Maritza Fundora

Maritza Fundora

DONATION: $25

God Bless you Tali! With everyone's donation and God powerful hand I am sure that they will find a cure soon. Love you, Mari 5 years ago

Adrian Esteban

Adrian Esteban

DONATION: $30

6 years ago

Iraida O'Callaghan

Iraida O'Callaghan

I love you Princess Talia. :) 6 years ago

michele stella

michele stella

DONATION: $50

6 years ago