The disease is taking away my child! I am asking for help and praying for a miracle…

My two-year-old daughter has recently received a diagnosis of Rett syndrome, an incurable, very severe, and rare genetic disease affecting the brain, spinal cord, and nervous system. This neurodevelopmental disorder causes, among other things, physical and mental issues, as well as epilepsy, cardiac problems, and apnea. 

Unfortunately, there is currently no cure for Rett syndrome. Over time, this results in a progressive loss of body functions, leading to a state known as a “Silent Angel”, where communication with the outside world diminishes, and acquired skills are lost. A child may lose the strength in the arms and legs. Rehabilitation is the primary and only form of treatment.

My daughter, Gaia, is currently in the stage of rapid deterioration, meaning the disease is advancing! Everything she has learned so far in the course of her development, the disease is causing her to forget! To witness this decline is heart-wrenching. I look at her and can’t believe how the disease is taking my child away from me! 

Just a few months ago, my daughter could use a spoon, but today she can't. Her hand movements have become uncontrollable, and stiff muscles hinder basic activities. Gaia has also lost the strength to climb stairs!

Gaia has been undergoing rehabilitation for a year now in Poland, where we reside. I am actively seeking treatment abroad because the current rehabilitation only offers symptomatic relief. I, however, want my child to become perfectly healthy! 

Clinical trials have begun for gene therapy, which is the only hope for Gaia! Sadly, the associated costs are staggering, making me go hot and cold. However, I know that without effective intervention and help, Gaia will lose her ability to walk and talk and eventually face severe cardiac issues in the advanced stage of the disease, which very often become the direct cause of death.

Fate doomed Gaia for failure at the very beginning of her life, and as her mother, I will do everything to change it. Despite the grim prognosis, I refuse to accept what fate has prepared for my child. I am urgently seeking help and support, hoping for a miracle to change the trajectory of her life. I am racing against time and committed to doing everything in my power so that the disease does not deprive me of my precious child. I am asking for help and a miracle!

Agnes (Gaia's mom)