Julia Mielnicka was born on 13th January 2004 in provincial hospital in Koszalin. As a neonate she developed correctly with no objections as far as her health was concerned. At the age of 4 months due to her worsening health, she was admitted to hospital in Koszalin. The initial suspicion was the infection of the urinary system. However, intensifying limb and face edema, constant insomnia and other symptoms resulted in carrying out more comprehensive examinations. The results showed a septic condition (infection with cytomegaly), fluctuation of glucose concentration, bradycardia with lowering arterial blood pressure and hypothyroidism. Being in a critical physical condition Julia was taken to the clinic in Szczecin. Further examinations in the clinic showed increased values of TSH, disorders of liver functions along with disorders of the coagulation system and also anemia. After a long battle and introducing intensive care Julia’s condition began to improve. After four weeks when Julia’s condition was good, she was discharged from the clinic. During her stay and treatment in the clinic in Szczecin Julia was also given a pretest for mucoviscidosis. The examinations by means of sweat tests showed that the level of chlorides went considerably beyond the standards and there was a necessity for a more thorough examination.

    On 28th September 2005 at Institute of Mother and Child in Warsaw Julia was put through a genetic examination what confirmed mucoviscidosis. The examinations proved mutation delF508, delF08 in gene CFTR in both alleles of the gene. mukowiscydoza

    Mucoviscidosis (cystic fibrosis) is the most common genetic disease. The cause of the disease is a mutation of the gene CFTR (cystic fibrosis transmembrane conductance regulator). The gene of the disease is located (and genetically transferred) on the long arm of chromosome VII.

    The most frequent variety delta F 508 (the one Julia suffers from) probably determines a heavy course of the disease. As a result, the body produces too sticky mucus which leads to disorders in all organs with mucous glands (among other things lungs, alimentary canal). Mucoviscidosis is a disease of the whole organism whose symptoms first of all are chronic lung and bronchial disease and also enzymatic failure of pancreas function with further digestion and absorption disorders. Sweat glands give out sweat with the increased concentration of chlorine and sodium (so called salty sweat).

    At present mucoviscidosis is still an incurable disease leading to premature death. The basis of the treatment is removing the secretion from the respiratory tract, cleaning the bronchial tubes and correcting the scarcity of pancreatic enzymes. Julia’s treatment is about using physiotherapy in order to clean the bronchial tubes and also applying antibiotics which must destroy bacteria and inflammatory substances as well as prevent the bronchi and lungs from the acute inflammatory condition. Comprehensive applications of both methods allows to slow down the irreversible changes in the bronchi, lungs and respiratory tract.

    Julia’s treatment is very costly and it does not result in a full recovery but only in the softening the course of the disease. Most of our time is devoted to Julia’s therapy and all indispensable procedures. However, Julia still remains a very cheerful and happy child. In her everyday life she applies Coelho’s rule she is happy for no reason, she is constantly busy with something and she claims what she wants as much as she can. Being aware of her illness Julia is a joyful child making the most of each day the joy of life.

    Our beloved daughter’s everyday care (treatment and rehabilitation) proves that this is not a ‘cheap?’ disease. Daily medicines especially inhalation ones and frequent examinations in specialist clinics are neither refunded nor cheap. We realize that with time our child’s needs will increase more and more. mukowiscydoza

    Thanks to our family’s and friends’ help we are trying to provide Julia with everything she needs as far as her treatment and rehabilitation are concerned. Other expenses fade into the distance.

    We really want our Julia to live in a usual way. We believe that with time this disease will become curable and we wish to give her a chance to live to that moment. However, we are not able to do it only by ourselves.

    We make a request to all people of goodwill and great heart, to all open to other people’s injustice for financial help. Every zloty counts. All your donations will be used for Julia’s treatment and rehabilitation.

    Our daughter has her own bank account in the cystic fibrosis foundation where we want to collect financial means indispensable for our Julia’s proper care. We are not wealthy and that is why we would appreciate any kind of help. Let a smile on our Julia’s face will be your reward for your generous hearts.

    Please deposit money in the following account:

BPH PBK S.A. I/O Krak?w
nr 11 1060 0076 0000 3300 0017 6998
necessarily with the note:: DLA JULII MIELNICKIEJ

    We thank you with all our hearts on behalf of our sick daughter,
Julia – parents Marlena and Bart?omiej Mielniccy


The story of Julia

    My name is Julia Mielnicka. I was born on 13th January, 2004 in Koszalin as a ‘healthy’ child. Nothing indicated that my short life would change dramatically.

    Only in May 2004, I was taken to hospital in Koszalin under suspicion of the infection of the urinary system. In hospital it turned out that I was infected with cytomegaly and also suffered from hypothyroidism.

    However, in spite of taking medicines my condition worsened day by day, hour by hour.

    My parents took me to the clinic in Szczecin. I was in a critical physical condition then. Thanks to wonderful doctors who took care of me in Szczecin and the eye of Providence after spending more than a month in hospital and a fight to live, I managed to come back home. The diagnosis was confirmed by genetic examinations at the Institute of Genetics in Warsaw – I suffered from mucoviscidosis.

    I am o normal child. At first glance nobody can see I am ill but only I know that in order to function and give myself a chance to live I have to take a daily dose of medicines, carry out inhalations, drainage and also be frequently examined in all kinds of clinics: pulmonary, thyroid, gastrological.

    It is not easy but I want to accept the challenge: I want to play along with my sister and other children, I would like to go to kindergarten, a later on to school. I know that I must be a disciplined girl to do that.

    Everybody who deals with this disease knows that its treatment is very expensive. My parents do their best to provide good care for me. However, they cannot manage financially alone.

    That is why on my and my parents behalf I am asking you to help me enjoy life. Maybe one day my disease will become curable.

    I hope I will make it with your help.

    My parents and I want to thank everybody for your hearts.


About the disease

    Mucoviscidosis (English – cystic fibrosis, CF) is the most common people?EUR(TM)s genetic disease. The cause of the disease is mutation of CFTR gene (cystic fibrosis transmembrane conductance regulator). The gene of the disease is located (and genetically transferred) on the long arm of chromosome VII. There are many mutations of the gene. In 1995 CFGAC Institute registered 600 varieties (mutations). The most frequent one, delta F 508 probably determines a heavy course of the disease. As a result, the body produces too sticky mucus which leads to disorders in all organs with mucous glands (among others lungs, alimentary canal). Mucoviscidosis is a disease of the whole organism whose symptoms first of all are chronic lung and bronchial disease and also enzymatic failure of pancreas functions with further digestion and absorption disorders. Sweat glands give out sweat with the increased concentration of chlorine and sodium (so called salty sweat). According to the recent studies, one out of 21 people carries the damaged gene causing cystic fibrosis.

    At present mucoviscidosis is still an incurable disease leading to premature death.

    However, what is crucial for the quality and life span of the sick is the early diagnosis and also starting proper and ordered treatment early enough.

    Treatment

    Treating lung and bronchial disease in the course of mucoviscidosis needs:

    removing thick and sticky secretion from the respiratory tract, controlling the acute chronic inflammatory condition of the bronchi and lungs by means of antibiotics

    Clearing the bronchial tubes off the secretion needs applying medicines that make it fluid and physiotherapy of the respiratory system. Effective physiotherapy not only improves patency of the bronchi but also limits the escalation of the chronic inflammatory conditions by permanent elimination of bacteria and inflammatory substances. At the same time it slows down the development of irreversible damage of the bronchi and lungs. Treatment with antibiotics aims at bringing under control bacterial infections of the bronchi and lungs. Applying full treatment in combination with physiotherapy is supposed to slow down irreversible changes in the bronchi and lungs.

    Treatment of the symptoms in the alimentary tract

    The basic rule is to correct the scarcity of the pancreatic enzymes and provide high energy diet covering 120-150 % daily caloric requirement of a healthy peer. Moreover, the given dose of vitamins, especially A, D, E, K should be increased. Unfortunately, at present there is no effective method of treating mucoviscidosis. The procedures and medicines mentioned above allow only to extend life and hope that soon an effective medicine will be found. The cost of treatment a single child is 1000?EUR"3000 zlotys monthly not counting parents?EUR(TM) time (one of them had to give up work) and also the costs paid by national health service. More information on SERWIS mukowiscydoza ?EUR" Cystic Fibrosis.

    Marlena i BartA,omiej Mielniccy ul. Wyki 43/2 75-950 Koszalin mobile 600 275 758