History

PAST - PRESENT

In the beginning the news came to us as a “shock” - no one prepared us that we would have an ill child,
Then, there came “fear” - how we shall deal with this problem – will we manage, will our child survive,
Then a feeling of ”protest” took over - why this happened to us and affected our child,
and then ”hope” came - it has to work out and Amelka must live against the diagnoses of the doctors,
Finally only “love” remained.

Despite all the difficulties, Amelka is a wonderful, cheerful and extremely sociable girl, who with great confidence and a big smile on her face learns about the world around her.
During the first year and a half of her life she suffered a lot. Most of this time she spent in the hospital, visiting home only occasionally. During her stay at home Amelka was happy and joyful but each time she had to go back to hospital she reacted with stress and fear of strangers.
Unfortunately, this fear has not disappeared until this day.
Amelka feels good only among people close to her and it takes her a long time to accept a new person. However, it is not just her fear but also the reaction of her organism. Stress she is constantly under leads to a discontinuation of intestinal work which most often results in ankylosis seizure, which lasts for a few hours, breathing difficulties, vomiting and dehydration. Unlike her healthy peers, Amelka is unable to perform many of such activities, as: walking, sitting, talking, and finds it difficult to hold toys in her hand even for a short time.
Of course Amelka makes progress within her own measure: she turns onto both sides, when held in a half-lying position, she can raise the head and hold it straight, she completes more and more requests, she willingly plays and finds every new impulse interesting, she plays with dangling toys.
As a result of a defective “junction”, i.e. the connection of spine and skull, Amelka’s life is constantly under a threat. Many times we almost lost our girl but fortunately, she was saved.
Amelka needs constant rehabilitation but, unfortunately, there are always some obstacles to it.
Rehabilitation was impossible due to the defective junction, and presently, her physical condition prevents the performance of treatment. A big obstacle are also a distention with gas (Amelka cannot urinate and pass stool by herself), seizures and weakness.
The girl is fed with a spoon, has a very good appetite and is properly fed, however, despite that she is not growing and gaining weight. Our girl will soon be over two years old but weighs 6400 grams and is 74 centimeters tall. We fear that this might be one of the characteristics of an undefined genetic defect syndrome. We are tired of our daughter’s new health problems which are constantly arising, therefore each positive opinion from professionals uplifts our spirits.
Recently, we have been informed by a psychologist and physiotherapists who have been observing our daughter about a significant progress in our child’s behaviour.
Sometimes, when we feel exhausted and overburdened with her disease, one little smile on the face of our child who has suffered so much in its short life, takes away our tiredness and gives us a new strength and energy to fight for a better tomorrow for our little girl.
Amelka will surely still suffer pain and we do not know what the future holds, yet we hope and believe that one day everything will change for the better of our child.

2005 r.
December became a very significant and wonderful month for us. Amelka started thriving. In 3 weeks she gained 700 g. Her great success is learning to roll from her back onto her belly and from her belly onto her back. It makes her extremely happy. We worked very long to make her trust people and stop being afraid of them, and finally we succeeded! Now, all visits of our friends and family are pure pleasure.

2006 r.
Year 2006 begun wonderfully. Amelka ceased having her seizures (most probably caused by the pressure on the spinal cord). In March and April two major head surgeries were performed. It was a very difficult time of our lives, having to look at the pain and suffering of our little daughter. After a couple of months it turned out that the surgeries were unsuccessful and the shape of Amelka's skull returned to its initial state. We pray that against all odds her brain still have some space to grow. Notwithstanding the severe spinal malformation Amelka more confidently raises and holds her head.

2007 r.
This is a year of hard and strenuous work of Amelka, the therapists and us _ the parents. We started intensive rehabilitation of Amelka and it bears tremendous fruits. Our daughter is a very bustling and vivacious girl. Without any problems she rolls from her back to her belly and back and very confidently holds her head. She eats all her meals sitting (she loves it) in her high chair. We started teaching our baby biting and eating single-handedly. Towards the end of the year Amelka started being put in the upright position in her verticalizer and manages beautifully. Although our daughter is stronger and makes huge progress, her last CT showed that the condition of her spine has deteriorated (again there is the risk of increased pressure on the spinal cord). Amelka in spite of her big appetite hardly gains weight. At the beginning of 2007 she weighted 7800 g and in the end of 2008 _ 8000 g, her height being 90 cm.

2008 r.
The year 2008 was for Amelka and for us mildly calm. Only the end of the year brought us bad news. On November MRI (magnetic resonance imaging) showed that there were other changes in spinal cord, which were connected with the spinal compression near the brain stem.

2009 r.
Unfortunately this year began for us very hard. Because of the spinal compression, many symptoms started to appear. Amelka has problems with moving and breathing. For a period of time, hemiparesis occurred. What is more, her scoliosis is getting deeper and deeper. Unhappily, we can´t figure on contemporary´s medicine help by now. Presently, specialists from Poznań are preparing for Amelka completely modern corset for the whole length of her spinal column. Moreover, our Angel can´t put on weight. She weighs only 8,5 kilograms, with 94 centimetres in height. To crown it all, we are weighed down by her deep haptic and acoustic sensory oversensitivity.