Nora was born in 2007 to Justin and Kristy Johnson, a happy and healthy baby girl. She smiled, babbled, giggled and surveyed the world with bright little eyes.



After the three month mark, Nora started falling behind many of her peers. After awhile, she no longer actively played with her toys. She would drop them frequently and had unusual motion with her fingers and hands. She started seeing therapists to help learn to crawl and sit up around the one year mark. Soon after one year, it was determined that Nora should see some specialists as she exhibited many behaviors that were similar to symptoms of Autism.



Nora was diagnosed with Rett Syndrome as the result of clinical study and a genetics test a week after her second birthday in 2009. It was a sad diagnosis but a diagnosis brought better treatment and therapy options. In 2010, around her third birthday, she learned to walk. She loved roaming around, greeting people and participating in activities.



Nora has spent a lot of time in hospitals. She suffers from frequent seizures and needs to have regular EEGs to measure the effectiveness of medication. It’s not all bad though, she gets lots of attention and, sometimes, special visitors.


She now attends public school and loves her teacher and classmates. She loves ice cream, music and horses. While Nora cannot talk or use her hands very accurately, she exhibits the same emotions, interests and desires of other girls her age.

There is hope for a cure for Rett Syndrome. Doctors and scientists have a much better understanding of the cause and potential treatments for the disorder than many other disorders. It’s an exciting time as research and options are being pursued every day. In the meantime, Nora gets tons of love and attention from her family and friends and they do the best they can to provide her with a happy, healthy life.


Thanks for reading about Nora. This site also provides more information about Rett Syndrome and Donating!