Annie's Page

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Girl Power 2 Cure funds research through RSRT. Click to view the projects

 
Special Thanks for Annie's 2014 Donors

Annie's Story

Annie was born on January 6, 2005. A beautiful, healthy, strong little girl that smiled from day one.She was a delight, very quiet, peaceful and delicate. At 9 months of age everything changed. Annie fell off her weight charts, failed to meet milestones and became very sick. She cried for hours inconsolably. Then she had a seizure. Tests were fun and finally at 15 months of age Annie was diagnosed with Rett Syndrome. After the initial shock of the diagnosis wore off and through the process of grieving we decided to do everything we could to help Annie acquire new skills and fight to keep the ones she already had.

Today Annie is a happy, healthy little girl. She is able to stand independently and walks with assistance. She doesn’t say any words but speaks volumes with her engaging eyes and infectious giggles. Annie loves music, animals, people, and going for runs in the jogging stroller but her favorite times are spent playing with her brother and sister. Annie is in preschool 4 days a week and attends occupational therapy, physical therapy, music therapy, animal therapy and augmentative communication. She has a beautiful personality and an attitude of strength and determination. Annie teaches us about love, patience, acceptance, hope and faith on a daily basis.She truly is our angel.

Rett Syndrome is a devastating disease that has robbed Annie of any sort of independence. She is not able to run, color, sing, dance, feed herself, reach for a toy, or tell us her needs and wants. Annie’s autonomic system has been affected, she has trouble chewing and swallowing and is fed through a g-tube for extra nourishment. She has anxiety, poor circulation, severe digestive problems, trouble regulating her breathing and body temperature, disrupted sleep patterns and scoliosis. Annie will need 24 hour care for the rest of her life. Currently there are no treatments or cure for Rett Syndrome.

Despite the grim reality of Rett Syndrome there is hope. Research for Rett Syndrome has uncovered its cause, a genetic mutation in the MECP2 gene. In February, 2007 researchers successfully reversed Rett Syndrome in a mouse model. Treatment and a cure for Rett Syndrome is now within reach. We believe that Rett Syndrome will be the first childhood neurological disorder to be cured but we need your help. Annie’s miracle is around the corner, the science is there, the funding is not. Without private funding our cure will remain decades away. Please help us is making this dream a reality and giving these girls a chance at life!

Annie’s A-Team! “Raising awareness to eradicate Rett”!

What keeps us going:“For I will restore health to you and heal you of your wounds” said the Lord." Jeremiah 30:17