IN HOPES OF SEEING HER SMILE EVERYDAY…
Amelka is unable to move independently, she is unable to speak which stops her from communicating with us. Despite this, her beautiful smile shines through and we want to see this, most incredible smile in the world, as often as possible.
At the moment we desperately trying to enable Amelia to communicate with us and the world. Great help with this would be eye-gaze technology as a method of rehabilitation, but it’s unbelievably costly. Aside from this regular speech development sessions with good speech therapist are needed, which is a big cost in terms of our finances.
Rehabilitation is necessary for Amelka, in order to prevent the further development of the Rett’s syndrome. Hipotherapy also shows good results but, again, that’s yet another cost. This list of expenses keeps on growing as now she also needs orthoses for her feet, exercise mats and rehabilitation equipment for our home, visits to a dietician, the mentioned rehabilitations on top of this and many more.
Amelka is the most wonderful and the sweetest little human being and we, as parents, have the responsibility to help her as best as we can to assist her in overcoming this incredibly difficult disease.
But we are unable to do it alone as our finances are limited and we can’t provide her with all the things that are an absolute necessity in achieving this.
To help us in helping Amelka please find kindness in your heart. We welcome any amount of help.
When Amelka turned one we knew for certain that something is not going right with her development. We were living in England then, where our concerns were ignored. This led us to deciding to diagnose her privately in Poland. A neurologist diagnosed low muscle tension and predicted that within couple of weeks the rehabilitation, using the Vojta method, will allow Amelka to catch up the development of her peers. Couple months have passed and despite small improvements, no significant change has occurred. Screenings from speech therapy also didn’t bring the expected results. We began to suspect autism.
In February, we began additional rehabilitation using the Bobath method, were it was suggested to us that Amelka may be suffering from Rett syndrome. In March we went to, for the first time, a hospital in Szczecin, where blood samples were taken for the purpose of genetic testing. Clinical screening was not entirely clear in a sense of some symptoms agreeing with Rett’s syndrome while others didn’t. One of the symptoms of Rett’s syndrome are characteristic hand movements which didn’t occur in Amelka’s case leading us to hope that she wasn’t suffering from this illness...
Unfortunately, our concerns became reality. In June we received the results from genetic testing which showed that without a doubt Amelka has Rett’s Syndrome. To us, it did not mean the end of the world but in one second our world turned upside down. We need the support of our close ones, we need to fight for her.