Thank you for visiting Annie's fundraising page!
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 run and finally at 15 months of age Annie was diagnosed with Rett Syndrome.
Rett Syndrome is a devastating disease that has robbed Annie of any sort of independence. She is not able to walk, color, sing, dance, feed herself, reach for a toy, or talk. 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.
Even through all of this Annie is a happy 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, she also has just started using an eye gaze computer. 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 school 4 days a week and attends many therapies. 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 is our angel.
There is HOPE in research. Research for Rett Syndrome has uncovered its cause, and in 2007 researchers reversed Rett in a mouse model. Treatment and a cure for Rett is now within reach. 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 in making this dream a reality and giving these girls a chance at life!
“For I will restore health to you and heal you of your wounds” said the Lord. Jeremiah 30:17
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