Orphans and sick children of Zaporozhye, Ukraine
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Alisa Onufriyeva, born in 2007 - cystic fibrosis

"Why was I born to stay in the hospital?"

Author: Polina Polozhentseva, Olga Vovk, translated by Oksana Nikolenko, www.deti.zp.ua Published: 2014-02-24 12-40-00 Viewed, times: 5897
  
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Alisa Onufriyeva born 20.07.2007

Diagnosis: Cystic fibrosis






Up to three months old Alisa weighed only 4 kilograms, since her birth she had not added a single gram. Parents and doctors sounded the alarm, so after numerous checkups a terrible diagnosis was set - a severe case of cystic fibrosis.

This is a hereditary disease caused by a gene mutation, with the defeat of the exocrine glands, severe violations of the respiratory and gastrointestinal tract. Such patients barely survive to adulthood in Ukraine. The situation is more favorable abroad where cystic fibrosis patients reach the age of 40-45 years. But, unfortunately, we are not in Canada, Germany or even Russia where almost all conditions are created for such patients. There they purchase Pulmozyme - expensive, vital antibiotics, special food, therefore life expectancy is several times higher.

So, back to our Alisa. She was born in Ukraine, in a loving family with an average income. This means that her mom and dad must spend 16,000 hryvnyas (1,735 US dollars) on medication monthly, and do a regular search of rare, expensive drugs.

The first six months of her life Alisa spent in the hospital. This time her mother - Natasha recalls with great sadness and pain:

- "I dont have any photos of my daughter during this time, as she was very pale and thin. I fed her from the pipette all the time. She was constantly hungry, every 20 minutes was ready to drink water. That's why the food was not digested. Mother's milk was quickly lost at such a pace, then we switched to the mixture. I was strong. I never thought about myself. Perhaps I just did not have any other options.



Alisa never went to a kindergarten, but this year the parents went to take the plunge - they sent their child to school. Now Mom and Dad are doing everything to their girl, so that she can feel the same like everyone else.

- "We dont let grandparent take pity on Alisa, - says Natalia.

- "Sympathy wont change anything. Our child should be happy."



Twice a year Alisa is hospitalized. If she is unlucky more often. There she has a number of procedures, which include antibiotics and drop counters. Her mother says that all this time the pharmacies have become second home for their family. It comes to ridiculous; if she does not come for some medicine at the pharmacy, pharmacists begin to worry.

At the age of four Alisa got arthritis. Doctors say that most likely the disease appeared in the background of cystic fibrosis. Now every year, during bad weather the girls joints ache. The whole family now quietly hates summer. The fact is in summer time Alisa has an allergy to seasonal plants. Therefore, parents try to take their baby to the sea in the most acute phase. As they say, out of harms way.

- "During the heat wave Alisa begins to sweat, so she loses a lot of salt. Our daughter constantly feels nausea, so she has to drink some special beverages to avoid dehydration. Its often tasteless but Alisa got used to it. The main thing is that she feels better afterwards"- says the girl's mother.

The girl is also accustomed to constant hospital visits and medicine. However, from time to time she watches other children and asks:

- "Mom, why do not they take so many pills?"

Her parents respond to such complex questions the way the can:

- "Because you're special..."

- "Why didnt you give birth to a girl who wouldnt have to stay in the hospital?"

- "We wanted you just the way you are. Otherwise it wouldnt be you. Each child has their prohibitions. For example, Anya is not allowed to eat sweets, Julia may not eat fish. You are not allowed to eat many other products..."

Every year Natalia and her husband try to tell Alisa more about her diagnosis, so that the girl would be aware of her treatment.



Now every morning when a little schoolgirl goes to school, her mother gives her two capsules of Creon medicine. It helps to split and absorb protein, fats and carbohydrates efficiently. Thanks to miraculous pills the girl can have breakfast in the dining room with her classmates. She knows that if she wants to eat any heavy meals she needs to take medicine.

Teachers are very tolerant to a severe diagnosis of the schoolgirl. Whenever Alisa feels bad - she is allowed to study at home. Each visit to the hospital means another big sum of money.

Natalia is currently jobless. Before her daughter was five years old, she kept her job in the Zaporizhzhya National University. Then it became clear that she needed to dedicate all her time to her sick daughter. Unfortunately the money that Alisas father makes is far from enough for treatment.

- "The child is growing. Every year the amount of medication is increasing"- Natalia shares with us.

- "In addition to vital drugs she constantly needs multivitamins. Because without it her skin climbs all over her hands and feet ".

There is currently no special complex of vitamins for patients with cystic fibrosis in Ukraine. Alisas mother, Natalia, has found such a complex on the Internet, but the cost of a pack of vitamins is 40-45 euros. Therefore, because of the lack of money she mixes it by herself due to the help of a special table. She also hopes that someday they will have a drain vibrating vest (VEST- System), a special way of cleaning the respiratory tract, which consists of an inflatable vest and a device of forced ventilation of chest. This device is now being actively used in the United States, Canada, Russia and allows to extend the lives of patients. But the cost of one of the vest is 20,000 hryvnyas (2,170 US dollars) which is an enormous amount of money for this ordinary Ukrainian family.

- "We seize the moment. All okay is good, but how it will be tomorrow - we do not know " - sighs Mom.



Now Alisa has a very active lifestyle. She plays along with the other children, goes to the choir, visits the gym, swims in the pool. She already has medals and diplomas. She is very ambitious!

For the girls phlegm to be better dissolved, her parents bought a home trampoline. Natalia believes they need to grab any chance to fight a terrible disease.

- "We deal with other patients with cystic fibrosis. We know that a young lady with cystic fibrosis in Zaporizhzhia has even given birth to healthy babies. Medicine is not stuck in one place. And we try to be as optimistic as possible. We just hope..."

This family, and many others, where kids are brought up with the same diagnosis, really needs your support! They are incredibly strong and loving parents, but they cant cope with such a calamity by themselves.... Support them, please!



This family lives in Zaporizhzhia.






Report on donations

Date: Donor: Country: Sum:
03.07.2017Yurij S.Ukraine100 US dollars
07.02.2017Vladimir D.Ukraine18.47 US dollars
20.05.2016VladimirUkraine19.64 US dollars
21.02.2016Vladimir D.Ukraine26.45 US dollars
28.12.2015Vladimir D.Ukraine21.61 US dollars
03.11.2015Vladimir D.Ukraine32.62 US dollars
20.10.2015Ukrainian Exchange charityUkraine2066.99 US dollars
14.09.2015Ukrainian Exchange charityUkraine1063.57 US dollars
05.09.2015Alexander .Ukraine13.25 US dollars
03.08.2015VitalinaUkraine4.73 US dollars
30.07.2015Vladimir D.Ukraine31.71 US dollars
06.07.2015Aleksandr E.Ukraine0.69 US dollars
01.07.2015Nadezhda S.Ukraine1.43 US dollars
28.05.2015Vladimir D.Ukraine28.8 US dollars
19.05.2015Nadezhda S.Ukraine1.45 US dollars
15.05.2015Irina S.Ukraine24.19 US dollars
14.04.2015Elena K.Ukraine6.62 US dollars
09.04.2015Helena B.Ukraine8.46 US dollars
01.04.2015Irina S.Ukraine4.24 US dollars
29.03.2015N. D.Ukraine9.71 US dollars
27.03.2015O. S.Ukraine4.22 US dollars
27.03.2015Zus M.Ukraine1.91 US dollars
27.03.2015ANNA .Ukraine21.12 US dollars
27.03.2015ElizavetaUkraine2.07 US dollars
20.03.2015Vladimir D.Ukraine22.97 US dollars
19.03.2015Nadezhda S.Ukraine1.38 US dollars
10.03.2015Anonimnyj zhertvovatel'Ukraine2.18 US dollars
27.02.2015Vladimir D.Ukraine17.83 US dollars
03.02.2015Vladimir D.Ukraine30.79 US dollars
13.01.2015katsolUkraine6.17 US dollars
16.12.2014VitalinaUkraine6.33 US dollars
12.11.2014JanaUkraine1.9 US dollars
03.11.2014Vladimir D.Ukraine38.61 US dollars
07.10.2014Andrew Z.Ukraine191.84 US dollars
24.09.2014Vladimir D.Ukraine38.63 US dollars
01.06.2014volunteers RussiaRussia849.26 US dollars
27.05.2014Vladimir D.Ukraine85.1 US dollars
14.04.2014K.ANNAUkraine3.83 US dollars
13.12.2013K.ANNAUkraine6.22 US dollars
02.12.2013L. .Ukraine12.51 US dollars
26.11.2013anonymUkraine0.62 US dollars
01.10.2013volunteers RussiaRussia3140.25 US dollars
23.08.2013volunteers RussiaRussia1563.87 US dollars
Total sum of received donations 9534.24 US dollars



Expenses report

Date: Expense title: Sum, US dollars:
15.08.2017Medicinal preparations: Cefodox 3 pack.34.64 US dollars
20.06.2017Medicinal preparations: Lorda hyal max - 10 pack50.34 US dollars
16.06.2017Medicinal preparations: Berodual 2 pack, Heptral 5 pack, Lazolvan, Metipred 3 pack, Flix 2 pack239.98 US dollars
16.06.2017Medicinal preparations: Nestle Resource Optimum 400g - 5 pack, Deflu Silver 2 pack, Smart Omega 2 pack85.72 US dollars
30.05.2017Medicines: Vasonate, Heptral 3 pack, Tivortin 10 pack146.55 US dollars
11.04.2017Spiral computed tomography of the chest with intravenous contrast33.37 US dollars
17.03.2017Medications: Berodual 2 pack, Hypothiazid 3 pack, Lazolvan 2 pack, Lorda hyal max 10 pack, Ursofalk, Enap 10 pack.148.52 US dollars
17.03.2017Medications: Smart omega 3 pack19.5 US dollars
25.01.2017Medications: Akvadeks80.49 US dollars
09.12.2016Medications: Akvadetrim, ACC Long, Ursofalk61.77 US dollars
15.11.2016Medications: Broncho-moon, Cardonat 14 pack, 6 pack Omeprazole, Preductal 4 pack, 3 pack Ursofalk, 10 Fluimucil pack, Hofitol 3 pack, 10 pack Enap337.06 US dollars
15.11.2016Medications: Smart Omega 10 pack67.07 US dollars
31.05.2016Medications : Nebula Ventolin, Flixotide Evohaler 8 pack86.41 US dollars
20.05.2016Medications: Smart Omega 6 pkg39.25 US dollars
20.05.2016Medications : Akvadetrim 5 pack, 10 pack ACC Long, Vazonat, Regidron 5 pack, systems OL 60 pack, 10 pack Sumamed, Tivortin 10 pack, 3 pack Ursofalk, Fliksotid 4 pack578.42 US dollars
20.05.2016Medications : Alphabet Classic 5 pack, 10 pack Smart Omega88.4 US dollars
19.05.2016Medications : Akvadetrim 3 pack, ACC Long 6 pack, Vazonat, metipred 3 pack, Regidron 4 pack, Salbutamol 10 pack, Sumamed 10 pack, Tivortin 10 pack, Ursofalk 2 pkg, Fliksotid 2 pkg, Fluimucil 8 pack, Enap 5 pack, Essentiale 7 pack392.97 US dollars
22.03.2016Payment analyzes on allergens80.02 US dollars
17.02.2016Sterilizer JBY 7676.49 US dollars
16.02.2016Patient Monitor CMS50B21.03 US dollars
02.02.2016Purchase of medicines: Vitamins Akvadeks67.59 US dollars
23.12.2015Medications: Akvadetrim 4 Cat, Fish Oil 3 pack, 5 pack Salbutamol, Sumamed Cat 5, Cat Supradin 4, Ursofalk, Fliksotid nebula 2 pack, Fliksotid evohale Cat 2, Cat 3 Essentiale forte213.17 US dollars
21.12.2015Medications: Pulmozyme 3 pack.357.91 US dollars
25.11.2015Purchase of medicines: Amikacin 10 PL Vazonat, 10pc Cannula, Catheter 20pcs, Sodium 20 PL systems OL 20 pack, 10 pack Tivortin, Fluimucil 6 pack, Fortum 30 pack, 80 pack syringes, Essentiale N 2 pack188.03 US dollars
31.10.2015Purchase of medicines: Ingamist 3 pack12.05 US dollars
27.10.2015Purchase of medicines: Akvadetrim 3 pack, 2 pack Ventolin nebula, Mucosolvan 2 pack, 2 pack Pulmicort, Sumamed 6 pack, Ursofalk, Essentiale forte N 3 pack185.82 US dollars
22.09.2015Consumables for nebuliser74.21 US dollars
11.09.2015Purchase of medicines: Levoflotsin 5 pack, Tivortin aspartate 3 pack, 2 pack Ursofalk, Essentiale forte N 11 pack182.11 US dollars
07.07.2015Fundraising in the social network on Facebook21.88 US dollars
07.07.2015Medications: Ursofalk, Berodual80.88 US dollars
07.07.2015Medications: Azitro Sandoz 10 pack, Akvadetrim s4 pack, Ambrobene s4 pack, ACC Long 4 pack, Berodual 4 pack, 2 pack Pulmicort, fish oil 4 pack, ursodeoxycholic acid Ursofalk 4 pack292.9 US dollars
07.07.2015Medications: Singlon 3 pack, Holiver 2 pack, Alphabet Classics 4 pack84.74 US dollars
15.06.2015Acquisition of medicines: Regidron 2 , Ursofalk38.65 US dollars
21.05.2015Fundraising in the social network on Facebook21.85 US dollars
07.05.2015Medicines: Pulmozyme 30 pack1915.43 US dollars
07.05.2015Drugs: Azitro Sandoz 6 , AZZ Long 3 , Ventolin, Kaltsy-d3 2 , Pms-ursodiol 2 , Pulmikort 2 , Cod-liver oil 3 173.58 US dollars
07.05.2015Drugs: Alphabet 2 , Holiver 2 20.56 US dollars
14.04.2015Drugs: Amikacin 8 pack, Vazonat, Tivortin 10 pack, 30 pack Ceftazidime, Essenciale 2 pack108.36 US dollars
31.03.2015Medicines: Pulmozyme 30 pack1145.29 US dollars
10.11.2014Medications: ACC Long Cat 3, Cat 3 Flomax, Calcium D3 Nycomed forte 2 pkg, Mucosolvan 2 pkg, PMS-Ursodiol, fish oil 2 pkg, Flixotide nebula131.69 US dollars
10.11.2014Medications: alphabet15.89 US dollars
31.10.2014Vazonat, Medopenem 20 Cat, Cat Tivortin 10, Fluimucil 2 pkg, Essenciale H 2 pkg382.24 US dollars
31.10.2014Kalsheyk 3 pkg64.7 US dollars
04.07.2014Medications: Akvadeks 3 pack111.8 US dollars
01.06.20140849.26 US dollars
13.05.2014Medications: Fluimucil 4 pack25.01 US dollars
06.05.2014Medications: Medopenem 20 pack, Singulair 2 pack, 10 pack Tivortin375.31 US dollars
11.03.2014Pulmozyme 10 pack.1602.44 US dollars
28.02.2014Buying drugs: Avamis, Akvadetrim Pack 3, Calcium D3, Yogurt Cat 5, Cat Vitrum 2, 3 Fish Oil Pack, ACC Long 3 pack.259.9 US dollars
13.02.2014Buying drugs: Myldronat, Tyvortyn 10 bundle, bundle 20 Fortum175.89 US dollars
10.10.2013Kalsheyk with neutrons. taste 87h 5 pack, Zoksytsef por.d/yn.1000mh vial. 25 pack254.6 US dollars
01.10.201303140.25 US dollars
26.09.2013Ursofalk tab. p / p / o 500 mg18.75 US dollars
23.08.201301563.87 US dollars
21.08.2013Purchase of medical equipment - nebulizers306.52 US dollars
Total expenses for this category 17131 US dollars








This publication related with such categories:
                 Needs of children with cystic fibrosis    Support children diagnosed with cystic fibrosis    News about Alisa Onufreeva    Publications made by Happy Child, Ukraine    



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