Ms Rebeka ČIHÁKOVÁ was born on August 10, 2014 with „butterfly-wings“ diagnosis. It is a very rare inborn and, unfortunately, incurable disease.
About the Family
Rebeka´s Father Richard works as a manager of a cleaning company, Mother Míša is a hairdresser. Rebeka has a brother called Ríša, who is a pupil and is by five years older than Rebeka.
In their family prevail very friendly relations. The parents go very often with children for a walk, visiting e.g. zoo, and hiking anywhere in the country. In addition to that they pursue sports, particularly father and brother often play ice-hockey. All of them together often ride bikes and go skating.
They try to live like any common family, however it is not always easy, because Rebeka´s disease requires a special care, a lot of patience and courage to cope with it. However, the loving parents care for both children as good as they are able to.
Sterile dressings on Rebeka´s wounds must be changed every day in order to prevent infection to penetrate into the injured skin. The summer weather is not good for her health. At the heat weather the vesiculation is getting worse and vesicles easily burst and are aching.
The butterfly´s wings disease is a rare sborn and incurable disease attacking the tissue. It is caused by the mutation of skin building gene. Approximately 250 – 300 persons are struck by the butterfly wings disease, which is manifested by a very fragile skin, the skin has a bad or no cohesiveness.
The disease attacks the largest body organ – the skin, but in some cases it also attacks the oral cavity, digestive, respiration and urogenital mucous membrane. The vesicles can be created in case of any slight pressure or friction. The problem may also be stiff food that causes painful swallowing. The food must be well balanced with sufficient nutriment, minerals and vitamines that support fast healing process and strong immunite system. The disease appears in a few forms, from a very mild form up to fatal one.
There are four basic forms of the disease: simplex, junction, distrofical and (very rare) Kindler syndrom. These forms are further divided into more than thirty subtypes.
At the little Rebeca a junction form of disease was detected , which is the most rare form (9 % patients). The vesicles appear all over the body even due light touches and injuries. Esophagus is badly affected, the patient often suffers from malnutrition, loss of teeth and hair. There are even some cases of death with sucklings. Unfortunately, the precise subtype of this form has not been determined, hence nobody can forecast the development of the dinase in future. It is strange, but we may welcome this fact, because there is a hope that it will improve or even be completely cured some time in future.
Unfortuately, the butterfly wing disease is incurable, hence the care involves first of all nursing, palliating of symptoms and prevention. The vesicle attending shall be performesd carefully and with observing absolute sterility in order to prevent the open wounds to become open door for infections. Very important issue is training of parents in suitable technique of nursing, to get to know more about the aids to be applied, the prevention and other important items. This training takes place in special centers.
In conclusion a few words of Rebeka´s Mum
„Rebeka was born with the diagnosis known as butterfly wings disease. We all were shocked and each of us has to cope with it in his own way, and we jointly managed to cope with it. The form of the disease is severe and so are the manifestations thereof. However, Rebeka is an extraordinary brave girl, and she teaches all of us that the life can be perfect if you smile, in spite of pains. We love her and we love her brother Ríša, and they both give us the true sense of the life preventing us from getting mad if we smile, no matter how difficult it may be.“
Official pages with much more information about little Rebeka, her family, butterfly wings disease and other activities of the family and a group of people always ready to help not only to Rebeka:
BASED ON THIS INFORMATION AND PRESENTATION
OF REBEKA´s MUM THE PROJECT
„R E B E K A ´S W I N G S“
APPEARED
Introduction of the author of the Project: My name is Jitka Adamusová,
I was born on July 11 a few years ago, and I live not far from the town of Hradec Králové. Due to my attitude to life and understanding of the world I became a policeman. The catchword of the Police of the Czech Republic „To help and protect“ conveys well what I would like to do in life, for the benefit of people.
In order to understand better human spirit and thoughts I decided to study at the University in the town of Hradec Králové, the pedagogical faculty, stream social pathology and prevention. My job is very challenging from time to time, therefore I often need to recharge the power, which I suceed to do by walking in the woods accompanied by my dog Alex, or by doing exercises, reading books, meditations and listening to music. Recently I have been listening first and foremost the songs of LP, and this made me also decide to take a special charitable project to contribute to or to participate in it.
This year I (SOMEDAY) decided to help to apply the TIGHTROPE to unite OTHER PEOPLE, who are STRANGE in a way or other in order to help to one injured little butterfly Rebeka LEVITATOR. I know that it will be a LONG WAY INTO THE WILD across the MUDDY WATERS. However I believe that by means of a MAGIC and HALO we will overcome all troubles and all will contribute to partial RECOVERY of REBEKA.
Why exactly the Rebeka´s Wings Project?
I wanted to connect the symbol of a „butterfly“, something so beautiful, fragile and in the same time injured, with the Arts and LP songs, with the power and potential of the LP fans, and with all of this to believe a cruel life fate of the little brave fighter Rebeka.
Motto: „Never give up and keep going to your dream“
The sense of the Rebeka´s Wings Project is to prevent the people from diverting the look when meeting the child with butterfly wings disease, to prevent parents from diverting the attention of their children by saying: „Do not point at him/her, do not look at him/her, come, let´s go off, do not say anything“ etc., because this brings a heavy pain and troubles to Rebeka´s Mum. When I addressed Rebeka´s Mum for the first time and presented her my Project, she was excited by the idea of the Project and she liked it very much. She told me that she would not mind should the painting be not sold at auction and hence the Project may finish., because the auction is not the main target for her. She takes as the most important the education of the public about the butterfly´s wings disease. She would be happy to make people know and be interested therein and take the disease into their subconsciousness, which will lead to success in implementation of the Project.
„And what is my personal wish? I wish the people when meeting the little Rebeka or another child suffering from the butterfly wings disease give them smile and heartfelt look full of love, because it is the least thing to do for the “injured little butterflies“. I do believe that it is the LP listeners and fans who have a loving heart and understanding, just in short, they are the very people with loving heart and understanding, in short – they are different,., they understand and identify themselves with the LP lyrics and songs.
Ms. Melánie Hertelová is another personality participating in the Project. She is 28, has two children and is happily married. She comes from Slovakia, from the town of Žílina. In 2016 she started painting, when she was on maternity leave and wanted to devote herself to something that may make her happy, she wanted to create something, so she does. She has ůpved painting from the childhood. She always enjoyed painting, and listening to music every day. She still remembers how her older brother played music on old cassettes on the tape recorder every evening before going to bed – Queen, Michael Jackson and the others. It is interesting that she had a quite different idea of the direction of her creativiy at the beginning, she simply did not enjoy painting portraits at all.
Later on, it was connection of painting with the music proved to be her proper way of activity, so she started to devote herself to Fan Art (or „fasnarty“, it is, as a rule, a visual form of a favorite person, scene and non-identical works influenced only by background, topic or just atmosphere). In March it was eight month from the moment she started to devote herself fully to painting. When she was listening to music or lyrics, her phantasy draw pictures in her head with which she wants or sooner needs to share with others, and therefore put them on the paper. She inserts a piece of herself into every painting. She has never studied plastic art, and so her works keep originality of her talents, her God´s gift. The originality and performance means for her more than technique and perfectness. She was happy to meet the artists, who told her: „this is the proper way, this is good, go on in doing what you do, because you are doing it well“. She estimates every reaction to her art, praises and critics, first of all from people who have achieved something … this moves her forward.
As she says to herself: „Inspiration is everywhere round us, I have found it in music.“. Lyrics and clips of various type of songs are addressing her, she has been listening to music for 30 years, be it rock&pop or her most favourit rap. In this quite wide mesh she simply could not miss the noticeable and interesting image of LP. The painting she devotes for the „Rebeka´s Wings“ project was created in the time when she was painting only for two months, and she painted it on a solollite plate on the floor, laying or sitting in turkish way on the floor. It was a perfectly spent month of her life…
Melánie declared:„ I am extraordinary happy to be able in such a „simple way“ to help to a good thing, and to make somebody return a smile into the face, because there is not anything I can do more than that.… Thanks for posibility to participate with you in the Project, I really do highly appreciate the fact. I believe the Project will succeed.“ -Mel-
For further works of Melanie see:
www.instagram.com/melahertelart/
and www.facebook.com/search/top/?q=melania%20hertelova
Profile of the Singer, who inspired Melanie to paint fanart (80 x 60 cm) that she decided to devote exclusively for the project „Rebeka´s Wings“ . The means achieved by selling it at auction will be used both for Rebeka, and for public education. Therewith will be possible to provide help to other people suffering from „butterfly wings dinase“.
Laura Pergolizzi, known also as „LP“, is an American singer and composer of Italian origine, she composes songs not only for herself, but also for stars of contdemporary world music, as e.g. Cher, Christina Aguilera, Rihanna or Backstreet Boys. She was born in New York and lives with her fiancée in Los Angeles now. She has been performing on the music scene for almost twenty years. At the end of 2016 she issued her best song for the time being, the hit „Lost On You“, her popularity was launched like a rocket and all at once and make the LP famous all over the world. She herself claims to be „just a singer“, but her voice, her activity, her talent and last but not least her smile proves her to be artist with a beautiful and sensitive spirit, she is simply fantastic and modest in the same time. She puts her heart, experiences, loves and disappointments into her songs. and herewith she addresses milions of her fans all over the world. They can find themselves in her songs and identify themself herewith. As you see and hear LP for the first time, your first idea may be, how such a little person can have such a voice, such a charism and so much energy that it can fill up the whole hall. There are many artists in the world of music, but there are only few of them that are unique and irreplaceable… the LP belongs to them without any doubt.
The used photographs of the singer LP were taken from internet, where the author thereof was not mentioned., they were put on the singe´s profile published on
social nets. We have no rights therwith connected.
Target of the whole Project:
Sale of the painting personally signed by the singer LP (fanart singer LP) on official pages of the official fanclub, handing of the painting to the winner of the auction, and in the same time handing of the achieved financial amount to Rebeka´a Mum, Ms. Čiháková.
Official singer LP Fanclub in the Czech Republic
LP Czech Official
The idea of establishment of the LP Fanclub in the Czech Republic was born at our founder, Mike Koukal, soon after he experienced LP on her first concert in the Czech Republic in Roxy Club in Prague on March 28, 2017. It obviously was a good idea, because our Fanclub has been spreading and giving publicity to LP music, creating a particular kind of background for LP fans in the Czech Republic, the place for them to meet, discuss and mutually support each other. In the same time our Fanclub accepted an uneasy task comprising following LP activity, her performances and concerts outside our Republic as well, and by means of short reports on our website www.iamlpfans.cz, inform therabout not only our members, but also other Czech fans. It is an uneasy task particularly due to the fact, that all of us have a permanent job, and LP on tour is quite a perpetuum mobile that cannot be stopped – the singer does not save herself and does not save us, the correspondents, either. Our reports can be also found on our social nets where we try to bring the contributions and ideas of our own, not only photographs and videos of the others.
Our membership basis is not very large, but in the virtual world of social nets we have more than 500 backers, https://www.facebook.com/lpczechfans/ , our discussing-group has 80 memberss and there are about 600 people following the instagram
https://www.instagram.com/lp_czech_official/
Mike Koukal for LP Official: „Should you ask, what captivate us LP with, our answer would be: fragility, charismatical spirit and character. Of course, it is first and foremnost her unique voice with fantastic range of voice with many colours in lower and upper levels, it is just the voice in connection with a very fragile being, full of humility, that gives raise to true emotions. LP is a witch that is able to connect herself by her songs with the audience in an unbelievable way. The audience consists prevailing of women, perhaps due to the fact that women are more sensible and better to „tune“ to the LP. It is well known that many women need a world of their own, and LP is able to create it perfectly. However it is the musíc, her singing, lyrics and her ability to join herself into them and to enjoy them, that is why she is so immediate and unique. The Fanclub takes all those who love LP under his wings, each of them can find in her something for himself, something that is worth living for…“
