Welcome to the website of our daughter Zuzia Opolska, who suffers from cystic fibrosis. We are a special, "clerical" family. Zuzia's father is a presbyter of the Eastern Orthodox Church, and he serves as the parish priest of St. Anne's Church in Boratyniec Ruski (a village in the Pidlachia region, located near Siemiatycze and the Holy Mount of Grabarka).
Zuzia was born on June 3rd 2007, seemingly as a healthy infant.
Apart from Zuzia, in our family there are also two sons. At the time of Zuzia's birth, Dawid was 13 and Szymon was 11 years old. Daddy was present at the birth and he cut the umbilical cord. So happy to finally have a daughter, he wanted the midwives to show him the proof. You obviously know what kind of proof 🙂 However, the joy did not last for too long. After just a couple of minutes a doctor came, saying that Zuzia was somewhat "greyish". She received the Apgar score of 9, got a course of antibiotics, and was sent home after the course was over.
Six days after the birth, and that was Saturday, Zuzia's daddy was swaddling her, when all of a sudden she started to vomit bile. The bile was spurting from her in large amounts, probably she vomited one litre or so. We immediately called a doctor, but he did not really know what to do, so we called to Białystok (the capital city of the region) for a special ambulance for newborns, equipped with a team of medical experts and an incubator. Waiting for the ambulance, I had to do the hardest thing in my life. I had to quickly baptise my dying daughter. Believe me, it was really the hardest experience that I have had. Before that, many people died on my hands, including my own parents and my parishioners who passed away either at home or in hospital.
After the ambulance came, the team stated that Zuzia could still be transported. If she had been in slightly worse condition, they would not have taken her, and … My wife and I followed the ambulance; needless to say that Zuzia's mother was not yet perfectly well after the labour. In children's hospital in Białystok an X-ray was taken, and it turned out that Zuzia's bowels had ruptured. On the sixth day of her life, Zuzia had the first operation. Seven centimetres of the bowels were extracted, the rest was reconnected, and everything was bound to be fine. Nevertheless, Zuzia's stomach was still growing and swelling up. Thus, after two days she underwent another operation, which revealed some problems with the mesentery. The problems were fixed, this time for good, as the doctors told us. However, the following day Zuzia's condition was so horrible that no drugs could be given via any passage of her body. Therefore, she was taken to the operating room again. Doctors put her under general anaesthesia, and for the next hour they were installing a central venous catheter. They made a cut in Zuzia's neck, inserted the catheter, placed four stitches where necessary, and sewed the ending of the catheter on to Zuzia's cheek. Then, Zuzia spent three weeks on the Intensive Care Unit. Sometime during those three weeks, we heard a doctor say:
"clinically, she is no more"
Zuzia was treated with three antibiotics which flowed through three pumps, all at the same time. The concentration of CRP (C-reactive protein) in Zuzia's blood resembled the one of septic patients. My wife and I told the doctors just to do their job, while we were doing ours. Together with my wife, I was sitting by the incubator day and night, and we were praying. And the whole world seemed to pray along. Monks in Poland and abroad begged the Lord for healing Zuzia. Thousands of priests celebrated the Divine Liturgy for her. Lay people, completely unknown to us, were coming to the hospital asking about Zuzia's condition and offering their help. In the meantime, we got a message from the Institute of Mother and Child in Warsaw. On the basis of screening done to Zuzia, they suspected cystic fibrosis. Because of this, the Institute wanted to examine another blood sample from Zuzia's heel. Thus, we got the blood extracted and sent to Warsaw. Towards the end of the third week of Zuzia's treatment on the Intensive Care Unit, a MIRACLE happened. The peristaltic movement in Zuzia's bowels reappeared. Then doctors could disconnect the central venous catheter and six peripheral venous ones from Zuzia's body. Also, two probes could be removed from her nose. But most importantly, at last Zuzia was able to breathe without the medical ventilator. For three weeks, Zuzia was alive owing to the Grace of God, and obviously thanks to all those machines. We finally saw her without any pipes, wires or other clutches, and we heard her cry for the first time. Before she only emitted "silent shrieks," because her tiny throat was blocked by the pipes. Thus, all that Zuzia did was open her little mouth. At last we could touch her. She breathed on her own.
Since Zuzia's condition improved, she was taken two floors up to the surgical ward. She spent there two weeks, and the only things doctors did to her was give her drugs and do check-ups. Because the results of her liver function tests were very bad, they brought a pulmonologist from the fifth floor to examine Zuzia. A middle-aged woman came. She took a look at Zuzia. We exchanged a few comments, and then she said that Zuzia was gravely ill. She also stated that Zuzia's skin was grey, that Zuzia had a heart defect (in fact she did not), that her cells were eating one another, and that everything was bad in general. On hearing all those, my wife nearly collapsed. I asked the doctor whether she really had nothing positive to say. She retorted: "woman, but it does not necessarily have to be this way," and she laughed. To me, after exchanging a few more sentences, she said something that I will remember till the end of my life.
"Man! You've made faulty stuff, so shut up!!!"
So I behaved accordingly. I shut up.
Later Zuzia was transported to Clinic No. 3 on the fifth floor, where there were children with different illnesses, and where the above-mentioned doctor N… worked. One evening a professor, the co-head of the clinic (together with doctor N…), came to us, and he said that he really wanted to have better news, but unfortunately, what he had to tell us was not very hopeful. He had already got the results from the Institute of Mother and Child, which confirmed that Zuzia had cystic fibrosis, with the most common and the most complicated mutation delF508.
We were stunned by the information. As we put it in Polish, the world just fell on our heads. Some doctors sat with us for a while, comforted us, and they went away. Thus, we were left alone, worn out by the long weeks in the hospital, and almost entirely hopeless. Still, as people of deep faith, we put our trust in the Lord. He was our only resort. We asked the doctors to let Zuzia continue her treatment in Siemiatycze, as we also had two young sons who were left at home under the care of strangers and who needed us, too. As a result, for the following two weeks Zuzia was finishing the antibiotherapy in a hospital in Siemiatycze. And everything was going well, apart form the fact that my wife and me were clinically exhausted, so now it was us who needed medication to live on. But maybe I will not dwell on that. We are alive, and so is our daughter.
When Zuzia finally left all hospitals, we just could not get over our happiness at the sight of our family and home. We almost felt as if the walls of our house had healing capacities. Our sons, who are now 16 and 18 years old, took over a lot of duties. Plus, our home is truly ecumenical. One of our greatest supporters is Ms. Irena Dopart, who is not even my parishioner as she professes Roman Catholicism. Zuzia calls her "granny." Our sacristan, Edek Bajkowski, is Zuzia's godfather. He and his wife Grażynka, who is Zuzia's favourite auntie, are in our house every day. Other people who are dear to us are i.a. Irena and Józef Konstanciuk, Irena and Jarek Pura, or Jola Mudel. We are so grateful to all of you. May God reward you with good health and joy.
For control check-ups, we would go to children's hospital in Białystok, the one we really had enough of. The visits were very quick. Doctors never had time. All examinations were always done by the professor, while doctor N… stood by and made comments, like "how come, the Opolski family have arrived and I'm not informed!" She always wanted us to pack our bags quickly, as there were other patients waiting. We felt that she was indirectly saying something like "go home, buy a coffin, and wait." Every visit looked the same, or even worse.
However, we eventually "used our heads" and, following the advice of other parents, we decided to move Zuzia's treatment to Warsaw. From our house to Białystok there are some 110 kilometres and to Warsaw there are 137, so the difference is really slight.
Thus, we went to Children's Memorial Health Institute in Warsaw. There we met two marvellous doctors, a pulmonologist, doctor Hanna Dmeńska, and a gastroenterologist, doctor Beata Oralewska. The visits at each doctor's lasted one hour and a half. We were in a positive shock! We had not expected such an approach, especially in the context of what we had been through, and taking into account the condition of Polish health service. In Warsaw we heard that the doctors were going to fight for Zuzia and that everything would be fine. Moreover, they completely changed Zuzia's therapy. They just could not believe that it was a professor who had established the doses of medication for Zuzia the way he had. That day, we started to live!!! Today our contact with both doctors from the Institute is so wonderful that they call us even from a conference in Berlin just to give us a piece of advice if need be.
This is how we live and, briefly, this is our story.
We cannot say that our life is the hardest in the world, but those who know what cystic fibrosis means, understand the burden of our cross. Still, when we look at our sweetie, we forget about all hardships. There are not many children with cystic fibrosis. Each of them is a special angel, sent to the Earth by God's will. In our case, it can even be said that we are an example of God's justice.
Thank you for all your prayers. Thanks to them, we live.
Zuzia appears to be a normal child who does not differ from other kids. She was born on June 3rd 2007. On seeing Zuzia for the first time, the majority of people say: "oh, what a cute girl, how smart she is, how well-behaved!" etc. When they learn that she is ill, they immediately ask what her problem is. After hearing "cystic fibrosis," they ask: "what's that?" This is more or less the approach of our compatriots. Although in the Republic of Poland cystic fibrosis is officially known, we, the families of the patients, do not feel it too much.
If you asked the officials from the Ministry of Health to enumerate genetic disorders that occur in Poland, they would probably not mention cystic fibrosis. Before Zuzia was born, we also had no idea that something like cystic fibrosis exists. We usually learn about that illness when it happens to us, our relatives, or friends.
Zuzia's struggle with the disease is identical, or very similar, to the one of other patients with cystic fibrosis. Wakey-wakey, inhalation, drain, drugs, pancreatic enzymes with every meal. In the afternoon the cycle repeats. It all takes a lot of time and requires a lot of strength, patience, faith, courage, love, wisdom, and prayer. The power of prayer is crucial to endure the fight.
Zuzia's therapy is very expensive. What is more, it only treats symptoms, not the causes of cystic fibrosis, so it only makes the illness proceed in a more benign way. The costs of treating a child with cystic fibrosis in Poland may range from 1500 to over 4000 zlotys per month, depending on how advanced the disorder is. Thanks to good-hearted people, both our friends and strangers, we try to give Zuzia all the best and all that she needs for therapy and rehabilitation. Other issues, including family matters, unfortunately have to be pushed into the background.
Every day Zuzia takes costly supplements. Clinutren Junior is about 36 zlotys, and Fantomalt is about 38 zlotys. Both of them last for three days. Also, Zuzia has to take special iron, which costs 50 zlotys and which lasts for a month. Among other problems, cystic fibrosis triggers anaemia. From the USA, we ship special vitamins called Aqua ADEX. They are $28, let alone the shipping cost. The vitamins also last for a month. As regards the medicines that Zuzia needs for inhalations, they are high-priced as well. To make matters worse, most of them are not refunded. Some of those drugs are not even available in Poland.
Treat the doctor with the honour that is his due, in consideration of his services; for he too has been created by the Lord (…) The Lord has brought forth medicinal herbs from the ground, and no one sensible will despise them. (Sir 38:1,4)
Taking care of a child who struggles with cystic fibrosis is really difficult and complex. It requires utter dedication, together with a lot of different medicines and special equipment. Thus, it is hard to describe all of it in detail.
I am sure that currently no Polish family who raises a child with cystic fibrosis is able to finance the therapy all by themselves.
Like all other parents, we want a normal life for our daughter. We deeply believe that one day cystic fibrosis will be curable, and obviously, we dearly pray for that. We also want Zuzia to witness that wonderful moment. Nonetheless, we cannot help her on our own.
Therefore, we ask all good-willed and good-hearted people for an act of mercy. We will be most grateful for your every prayer and your every financial contribution. Really, even a token sum matters. We assure you that the money that you donate will be entirely used for Zuzia's treatment and rehabilitation.
Zuzia has a sub-account in the Polish Society Against Cystic Fibrosis. On that account we want to accumulate the resources needed for Zuzia's therapy. We, the parents, are strictly denied direct access to the money you transfer there. For example, if we want to buy medicines for Zuzia and pay with the funds from the sub-account, we go to the chemist's and they just charge the Society for our purchase. This is how it works.
We are an ordinary family. At present, my wife is a stay-at-home mum, because, as you imagine, taking care of Zuzia is really demanding. I am the sole breadwinner, and, as you remember, we also have two sons who require our support.
Sadly, our relatives do not help us at all. Since the day of Zuzia's birth, nobody has even asked if she needs anything, whether we can afford the drugs, etc. You surely understand what I mean, you must have experienced something of that sort.
Our real family consists of you, people of good will, of you, who do not care about one's convictions, skin colour, or religion. Unfortunately, cystic fibrosis is also truly egalitarian; it harms people from all walks of life.
We are not rich. We live, to quote a well-known Polish saying, "from the first of the month to the first of the next month." Still, we always manage to find ways to help others, because,
In truth I tell you, in so far as you did this to one of the least of these brothers of mine, you did it to me. (Matt 25:40)
Carry each other's burdens; that is how to keep the law of Christ. (Gal 6:2)
We accept everything as the will of our Lord.
As Christ has undergone bodily suffering, you too should arm yourselves with the same conviction, that anyone who has undergone bodily suffering has broken with sin, because for the rest of life on earth that person is ruled not by human passions but only by the will of God. (1 Pet 4:1-2)
We will be most grateful for all your invaluable support. Please, give Zuzia just one more while, hour, day, month, year, a few more years …
GOD BLESS all our benefactors.
MATIO, Fundacja Pomocy Rodzinom i Chorym na Mukowiscydozę
Account for donations in Polish currency: 55 2490 0005 0000 4530 7261 9403
Account for donations in foreign currency: PL55 2490 0005 0000 4530 7261 9403
Postal address of the bank: PKO BP SA, ul. Józefińska 18 ; 35-520 Kraków
BIC (SWIFT): BPHKPLPK
Purpose: FOR THE THERAPY OF ZUZANNA OPOLSKA
(NA LECZENIE ZUZANNY OPOLSKIEJ)
Our private account:
PL 08 1020 5558 0000 8902 3166 4531
Postal address of the bank: PKO BP SA DR-BE INTELIGO, ul. Puławska 15 , 02-515 Warszawa
BIC (SWIFT): BPKOPLPW
(click "kontakt" for our address )
(adapted from http://www.nhlbi.nih.gov/health/health-topics/topics/cf/)
Cystic fibrosis, or CF, is an inherited disease of the secretory glands. Secretory glands include glands that make mucus and sweat. "Inherited" means the disease is passed from parents to children through genes. People who have CF inherit two faulty genes for the disease – one from each parent. The parents likely do not have the disease themselves. CF mainly affects the lungs, pancreas, liver, intestines, sinuses, and sex organs.
Mucus is a substance made by tissues that line some organs and body cavities, such as the lungs and nose. Normally, mucus is a slippery, watery substance. It keeps the linings of certain organs moist and prevents them from drying out or getting infected. If you have CF, your mucus becomes thick and sticky. It builds up in your lungs and blocks your airways (airways are tubes that carry air in and out of your lungs).
The build-up of mucus makes it easy for bacteria to grow. This leads to repeated, serious lung infections. Over time, these infections can severely damage your lungs. The thick, sticky mucus also can block tubes, or ducts, in your pancreas (an organ in your abdomen). As a result, the digestive enzymes that your pancreas makes cannot reach your small intestine.
These enzymes help break down food. Without them, your intestines cannot fully absorb fats and proteins. This can cause vitamin deficiency and malnutrition because nutrients pass through your body without being used. You also may have bulky stools, intestinal gas, a swollen belly from severe constipation, and pain or discomfort.
CF also causes your sweat to become very salty. Thus, when you sweat, you lose large amounts of salt. This can upset the balance of minerals in your blood and cause many health problems. Examples of these problems include dehydration (a lack of fluid in your body), increased heart rate, fatigue (tiredness), weakness, decreased blood pressure, heat stroke, and, rarely, death.
If you have CF, you are also at higher risk for diabetes or a bone-thinning condition called osteoporosis. CF also causes infertility in men, and the disease can make it harder for women to get pregnant.
The symptoms and severity of CF vary. If you have the disease, you may have serious lung and digestive problems. If the disease is mild, symptoms may not show up until the teen or adult years.
The symptoms and severity of CF also vary over time. Sometimes you will have few symptoms. Other times, your symptoms may become more severe. As the disease gets worse, you'll have more severe symptoms more often.
Lung function often starts to decline in early childhood in people who have CF. Over time, damage to the lungs can cause severe breathing problems. Respiratory failure is the most common cause of death in people who have CF.
As treatments for CF continue to improve, so does life expectancy for those who have the disease. Today, some people who have CF are living into their forties or fifties, or longer. Early treatment for CF can improve your quality of life and increase your lifespan. Treatments may include nutritional and respiratory therapies, medicines, exercise, and other treatments. Your doctor also may recommend pulmonary rehabilitation (PR). PR is a broad program that helps improve the well-being of people who have chronic (ongoing) breathing problems.
Łącznie czytano 1,600 razy, Dzisiaj czytano 2 razy