Elena is 3½ years old and was diagnosed with Rett Syndrome in March of 2014 at 20 months of age. Rett Syndrome is a rare neurological disorder that occurs almost exclusively in females following apparently normal development for the first six months of life. This disorder affects almost every aspect of these individuals' lives, and requires maximum care 24 hours per day.

Rett Syndrome has taken away Elena’s ability to speak, her purposeful hand use, and has caused severe gross motor delays preventing her from walking or even sitting independently. Like many girls with Rett Syndrome, she also suffers from a seizure disorder, experiences daily gastrointestinal problems, and displays constant repetitive hand and body movement. The most debilitating aspect of her disorder is the restrictions on expressive communication that Elena experiences. While she can understand everything around her, she is unable to express her thoughts, wants, or needs in a typical manner, which makes expressive communication extremely difficult and sometimes impossible.

Though the severity of the disorder is great, there is much hope in the world of Rett Research. Many drug trials are currently taking place in an effort to discover viable treatments that will greatly improve the quality of life for girls and women suffering from Rett Syndrome.

Thanks to Miracle Flights, Elena has been able to participate in the 68 week clinical drug trial for IGF-1 over the course of the past year. We are very exciting for what lies ahead for Elena and all of her fellow Rett angels.

Elena's mother
Illinois

Photo and story provided by Miracle Flights