Eliška - Story of a Fighter
Our story began 10 years ago, when we were waiting for our longed-for baby. The pregnancy went almost without problems, the birth was on time, and we welcomed a beautiful little girl, Eliška.
At around three months, we noticed that compared with her peers she was lagging behind in development and was stretching her legs in some unusual way. So at that time our pediatrician sent us for an examination by a neurologist, who said that every child develops at their own pace and that she was only a little delayed, and recommended rehabilitation. Since then we have been doing Vojta therapy and примерно every 4 months going for an EEG to check whether Eliška suffers from epilepsy.
Diagnosis
The exercises helped Eliška, but even so she developed much more slowly than her peers. So at our own request, when Eliška was 18 months old, we decided to go to the General University Hospital in Prague, to the Department of Child and Adolescent Medicine, where we were admitted for a diagnostic stay. The result of this stay was a diagnosis of Angelman syndrome.
Our Eliška will never be able to speak, her psychomotor development is very delayed, and she still cannot walk properly. She has problems with coordination and balance. Part of this syndrome is waving and balancing with the upper limbs, flapping her arms, special behavior, very frequent smiling, usually a happy mood. She can only maintain attention for a very short time, she is hypotonic and has abnormal EEG results and is unable to take care of her own hygiene independently. Her eyes are crossed (in September 2015 we underwent strabismus surgery), she has a "big" tongue as if it cannot fit into her mouth, which she constantly sticks out, she has a poor sucking reflex and problems with swallowing. She suffers from frequent drooling and tongue movements, putting objects or her hands in her mouth, and involuntary mouth movements. She has a prominent lower jaw (normal size, but pushed forward), widely spaced teeth, and hypopigmentation (insufficient skin pigmentation), meaning lighter hair and eyes. She has poorer thermoregulation and a major problem with sleep disorders, with a reduced need for sleep.
At the age of two, we visited the spa in Teplice in Bohemia for the first time, which helped Eliška a great deal, and we were recommended to undergo it twice a year, so we repeat such a stay approximately every half year.
We visit ophthalmology, orthopedics, psychology, neurology, nephrology, speech therapy, early care, acupuncture, and since September 2014 Eliška has been attending a special day care center with hydrotherapy, where she does rehabilitation daily, undergoes hippotherapy and music therapy twice a week, occupational therapy, and has a special educator and a group of people who take wonderful care of our daughter. In this facility there is an off-site workplace of the Rooseveltova Special Primary School, and Eliška is a pupil of this school.
Our daughter is severely mentally and physically disabled; she lives in her own world. At the moment she does not really walk, although she can cover a few meters; she can sit and crawl, but according to the rehabilitation therapist this is not yet proper crawling or walking. She functions at the level of a baby, and is fully dependent on the care of another person. She loves water, bathing, aquaparks, playgrounds, swings and climbing frames, musical and light-up toys, and most of all her mommy and daddy.
Over the past few years, Eliška has improved in movement, and we would like to help her walk independently. She was able to function without diapers, did not mouth objects, and in the future we would like to try some alternative way of communication (iPad, cards). Every small step forward she makes brings us joy. She is our great fighter, a beautiful little girl, a smiling sun, whom we love above all else. In May 2015, our second daughter Sofia was born, in October 2017 our son Matyas, and we believe that they will help pull their sister forward in her development.
In October 2021, I was unfortunately diagnosed with breast cancer. Our family’s financial situation worsened and I lost my job. My treatment is a long-distance run.
In today’s modern age, there is a very widespread trend of general dissatisfaction with everyone and everything. We too could belong among the category of constant complainers, and I dare say that unlike most of them, we would even have a valid reason. Why us, then? Because instead of the long-awaited healthy baby, we were given a severely disabled daughter.
It has now been more than 10 years since our lives changed from the ground up. A wonderful future and grand plans collapsed for us like a house of cards. We went through a phase of thoughts beginning with the word "Why" and felt that our life had just ended.
Fortunately, today, after more than 10 years, I can honestly say that we do not belong among the complainers. We soon understood that lamenting over fate would solve nothing and, above all, would not help our daughter, who simply needed us. Step by step, we learned what life is like with a disabled baby, toddler, and today already a schoolgirl, even though in a way she is still a baby.
On our journey, there were not nearly as many beautiful things that mothers of healthy children normally experience. On the contrary, what has accompanied us, and in fact still accompanies us, are above all doctors, rehabilitation, authorities, spa stays, and other similar matters that parents of a healthy child have no idea about. But we are here for our beloved daughter, who needs us.
Today I see everything from a different perspective, in the spirit of the motto "Every cloud has a silver lining". More than ever before, though, I have also realized one more thing. All the blows of fate are much easier to bear if a person is not alone in facing them. And our family is not alone. We have many people around us, whether among doctors, other healthcare workers, or just "ordinary" officials and friends, who have not abandoned us and are trying to help and be accommodating so that they can make our situation as much easier as possible.
Among this group, I also include your charitable activity - helping, which helps, and we thank you and truly appreciate you for it!
Eliška also has a transparent account from which we cover her extra rehabilitation expenses.
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