HELP JULIA

    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.

    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 'cheapâ' 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.

    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:

    We thank you with all our hearts on behalf of our sick daughter,
Julia - parents Marlena and Bartłomiej Mielniccy