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At first glance, Emilka, called Mimi by her parents, is a beautiful five-year-old girl with charming eyes. The girl's everyday life, however, is pain, convulsions, uncontrollable crying, which is not helped by any pharmacological agents, teeth grinded from grinding and inability to contact the world. It's Rett syndrome.
It's a genetic disease that keeps little Mimi trapped in her own body. - We are sure that Emilka understands everything, it shows that she wants something very much, but she can neither say nor show it. He is a conscious child. It's just that Rett deprived the possibility of communication - says Małgorzata, Emilka's mother.
Nothing indicated that after Emilek was born, he could have such great he alth problems. Her parents were expecting their first child with joy, they watched how Małgosia's belly was getting bigger. - I felt great, and the pregnancy was perfect. From the very beginning, I was under the care of a gynecologist who performed an ultrasound at each visit. We also had prenatal tests which showed nothing disturbing. We waited calmly for Emilka - says Małgorzata.
The longed-for daughter was born in September 2010. Just like her peers, she learned something new each month: she would sit down, crawl, take her first steps, utter her first words. The drama began when Emilka was one and a half years old.
- In December, we noticed that something was wrong with Mimi. Suddenly, toys fell out of her handle, she was trembling incredibly. It is indescribable, because within a few weeks our daughter lost everything she had learned: she stopped talking, she stopped walking. We thought then that Emilka was dying - says Małgorzata.
To find out what was going on, the girl was subjected to a series of specialist examinations.
- A head tomography and an EEG was done and this examination showed that Emilka has epilepsy. At the time, it seemed like the end of the world. I remember how this news shocked me. I did not know then that this was just the beginning - says Mrs. Małgorzata.
Emilka's disease progressed, it was getting worse every day. - Mimi stopped getting to know us, didn't react to any sounds, to nothing. We've done all possible research and the only thing we can doleft, it's genetic research - says Małgorzata.
Already during their first visit to a geneticist, they heard that their daughter's mysterious disease might be Rett syndrome. - It is such a rare disease that, even though I work with disabled children, I only knew Rett syndrome from my studies.
On March 13, 2013, Emilka's future results. - My husband went to get them. When he came to see me for work, I looked at him and I knew it was wrong. Even though two years have passed since that day, I still remember that moment. Genetic research has confirmed the worst-case scenario. Rett officially appeared in our lives - remembers Mrs. Małgorzata.
- We found out then that there was nothing we could do for our child. In the case of other diseases, it happens that, together with the diagnosis, parents find out that a cure for a given disease is very expensive or that it is only available abroad. They can fight, collect money, act. We learned that we can do nothing. Because there is no cure for this disease - says Małgorzata.
What is everyday life with Rett syndrome? - Something terrible. It's like putting the symptoms of cerebral palsy, autism into the body of one little girl, adding drug-resistant epilepsy, hyperventilation, convulsions and stereotyping of hands - our Emilka claps her hands against her will, rubs them, waves them or hits them. They only rest when the little one is asleep - describes the symptoms of Małgorzata.
The world of the family changed in an instant. They had to reorganize their lives. Their priority?
Emilka's happiness. - We realized that we had to do everything to facilitate Mimi's already difficult life. Emilka must be rehabilitated, because if she were not, she would be a lying child today. But this rehabilitation cannot be an end in itself, it has to be intense, but it cannot tire our child excessively. Because Emilka, despite the fact that she is incurably ill, is first of all to be happy - says Małgorzata.
The worst thing is not Emilka's physical disability. - I have already got used to the fact that every day I carry my slender daughter weighing 20 kilograms. But both my husband and I cannot come to terms with what our child is going through. Because Rett syndrome is such an emotional avalanche. Suddenly, for no reason, Emilka falls into an incredible cry, screams, terrible fear appears in her eyes, and we cannot do anything. The only thing we can do then is hug her and wait out the worst moments together - confesses Małgorzata.
There are no ready solutions. Every day, parents learn how to live with their daughter's illness. They learn to enjoy every moment. And to show what life in Rett's land is all about. Because ofEmilka's illnesses were never taboo. On the contrary.
- A month after hearing the diagnosis, with the help of friends, we started to organize a concert for our Mimi. Since girls with Rett syndrome are often referred to as "silent angels," we en titled it "Where Silent Angels Fall." From the beginning, I was convinced that the more people knew about this disease, what this disease is and how it manifests itself, it will be easier for Emilka. We wanted to tame Rett a bit - recalls Małgorzata.
Then it was time for sessions presenting Emilka, her parents, her world. To show the environment that Emilka is a beautiful, wise girl who, despite her illness, does not give up - she wants to live and feel. So do we all.
- Just because your daughter doesn't speak doesn't mean that she doesn't understand and has nothing to say. No matter how sick she is, she wants to communicate. And this is what we are fighting for: to give her a method that will allow her to show us her needs, wants, and opinions. Because she has her opinion. Only he cannot express it verbally - says Mrs. Małgorzata.
To fight the daily fight for Mimi, a girl's parents must have a lot of mental strength. Sometimes this is missing. But our heroes also found a way to do that.
- One day my husband told me: "Gosia, you need to find some form of activity. If you get tired physically, your head will have a rest." I started running with him. I started from scratch lying on the couch. Every kilometer was a success for me. Today I cannot imagine my life without running. I run because physical pain and fatigue temporarily dampen my mother's heartache. I'll never be as fast as Rett, who consistently steals my daughter. But I will always chase him - says Małgorzata.
And that parents do everything with Emilka in mind, they decided to include her in their passion. - We set up the "Walcz like Mimi" running group, we have yellow T-shirts with this slogan, with a photo of our Emilka. When someone runs after me, he sees a picture of our daughter, he sees the name of her disease. She often finds out that there is such a disease at all. It happens that at the finish line people come up to us and ask who the girl is, which means the slogan "Rett" - says Mrs. Małgorzata.
Rett syndrome is unforgettable. - Emilka is in the third stage of the disease, at the stage of stagnation. It is true that she does not speak and does not walk, but when she has a good day, she crawls on her own, she can move to a toy that will interest her. In theory, the worst is behind us, but we can still feel Rett breathing against our backs, the fear that it could be even worse. That Rett hadn't said the last word yet. However, we do not give up. We trylive by the principle: "It's not about waiting out the storm, but learning to dance in the rain." And we dance in this rain every day - says Mrs. Małgorzata.