Lenka - life in the rhythm of therapy and hope.

Her daily routine is structured around rehabilitation, exercise and specialist support. She primarily crawls and requires assistance with every activity, but remains in constant contact with her loved ones and the surrounding community. Lena functions in a world where regularity, consistency and access to modern treatment are of great importance. Every day is a work to maintain fitness and comfort of life. What does she face on a daily basis? Lenka has Rett syndrome, a rare genetic neurological disease caused by a mutation in the MECP2 gene. The condition affects both her motor skills and intellectual development. She doesn't walk, she mail and requires round-the-clock care with all daily activities. She regularly uses intensive rehabilitation, including physiotherapy, speech therapy, sensory integration therapy and supportive communication. She also requires specialized equipment and trips to the U.S. for testing and receiving Daybue, which is currently the only treatment available for Rett syndrome.