Mighty Ivy

Meet Ivy Raley. Ivy and her twin sister, Isabel, are precious three-year-olds. While Isabel is very much a walking, talking, playing toddler, it was apparent very early on in her life that Ivy was not the same as her sister. Ivy didn’t grow much at first and struggled with eating and reaching other milestones. She couldn’t hold her toys, and it was through occupational therapy that she was able to sit up by her first birthday. Doctor after doctor misdiagnosed Ivy with various different things and some even said that her symptoms pointed to autism. It wasn’t until the Raley’s found a very thorough Nurse Practitioner that specialized in genetic diseases that answers were finally found for Ivy. She was diagnosed with Rett Syndrome.

Rett Syndrome is a disease affecting girls that is caused by X chromosome mutations and causes problems with brain function that interfere with cognitive development. Problems that come along with Rett’s include seizures, pain, irritability, the loss of fine motor skills, possibly inability to talk or walk, and more. In Ivy’s case, she cannot crawl, walk, talk, or fully use her hands. However, she is fully aware of and understands everything that is going on around her, just like her sister. It is her body that keeps her from functioning like most other toddlers.

Currently, Ivy undergoes many procedures to help with her quality of life. She’s had several different PICC lines, g tubes, Broviacs, and more. She uses eye gaze software called Tobii to help her communicate. She takes medicines to prevent seizures. Her life consists of doctors, machines, and tubes.

I am writing about this precious little girl because there isn’t a cure for Rett Syndrome. Her parents use her story to help bring to light a disease that many people do not even know about. With the raising of awareness and our help, we could see a cure for Rett Syndrome. So please, for Ivy, spread the word. She and her sister are beautiful little girls, full of personality and life.

This is just a small piece of her story, so if you’d like to learn more about Ivy, you can follow her Facebook page at https://www.facebook.com/mightyivy/ - On this page, you can stay updated with Ivy’s life, read more about her story, and also shop Mighty Ivy items to help her family give her the best care possible.

If you’d like to learn more about Rett Syndrome or donate to research to help cure it, you can visit this site: http://www.rettsyndrome.org .