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May 2013...

Several sponsors joined to us to help kids

In the beginning of April, we signed up for the Global Charity project via
World Childhood Foundation.
Within two months we had collected 35,000 EUR from 24 different sponsors to support and develop our programs.
Through this campaign, we have not only collected necessary funds, but also had an opportunity to once again feel your love and support! Thank you for being with us!

In 2010...

Russia, Ukraine and Belarus receives help from UK

People now living in the former Soviet states often find even the basic essentials hard to come by. Things that we take for granted! ABC Charity has made five major humanitarian aid trips in sizeable vehicles as well as providing smaller amounts on numerous other occasions. The first was a three week visit to Pskov, Ryazan, Kostroma, Kaluga and Moscow in a 7.5 tonne lorry kindly loaned by Iveco Ford. Among the cargo were items of medical equipment including an electrocardiogram, as well as food parcels and warm winter clothing. Soon after that, using a lorry loaned by Raymond Ltd of Bridgend, set off with a similar itinerary and load. A third journey to the same destinations was then planned and successfully completed, with support from Volvo Trucks who loaned us a 38 tonne articulated lorry and Central Trailer Rentco who supplied a trailer. This visit included a visit to an orphanage and two hospitals.
The next visit was to Chernikov in the Ukraine, where whole communities were still suffering the after-effects of the tragic Chernobyl nuclear disaster. We struck up a relationship with a Church there, led by Pastor Peter Kasov, and Peter was able to coordinate the distribution of the aid within the Church and also to local hospitals.

Funds to cover the costs of transportation have been boosted by holding an auction (kindly supported by Barclays Bank) and other supporters have made greetings cards and scarves. All money raised is used to increase our support to the communities in Belarus with whom we have contact. We have also been able to access supplies at substantially reduced prices.

Our latest, biggest and most exciting project relates to a former hospital building in Marina Gorkova. Our partner charity in Belarus are committed to its conversion into a rehabilitation centre for alcoholics - high unemployment levels and cheap alcohol lead to frequent cases of abuse, which in turn lead to broken lives and broken families. Our aim is to provide all of the financial cost of its conversion, a sum estimated to be GBP 15,000. Already we have accessed over 100 sealed window units from two blocks of flats which are scheduled for demolition.

2009...

We were again privileged
to host another visit of a party of youngsters from Belarus. 2009 of course is a particularly poignant year as it marks the twentieth anniversary of the Chernobyl nuclear disaster. This year, we welcomed 11 teenagers plus four accompanying adults, not forgetting 3 year old Nastia.

 

 

Education and Health Center

A very important part of our programs of getting children back to a normal life is our Education and Health Center.

Many of the children are in great need of medical assistance, both for treatment of serious diseases and help to get their life back. After years of living on the streets of Odessa our own psychologists and physiotherapists offer professional help to the children. Our own medical staff takes care of other medical treatment and to complete our offer the children can start in our own school as part of the long process.

We can take care of up to 200 children at any given time at the center.

Our "Centre for Education and Health of Street children" is the first of its kind in Ukraine.

The Centre has space for up to 200 children. The following initiatives take place here:

- Sessions and classes based on a typical school program within the framework of the 'catch-up school'
- IT courses
- Physiotherapy exercises
- Arts and crafts groups and creative competions
- Home economics classes
- Organisation of excursions, cultural and other educational activities.
- Consultations with psychologists, social workers; gynecological examination
- Provision of advice on HIV/AIDS and STDs to promote a healthy lifestyle




Social Patrol

Every day our two teams search for children living on the streets by visiting the places we know by experience they gather.

Each team consists of social worker, lawyer, medical worker, psychologist and volunteer.

The following initiatives are realized:

* Search for the places of gathering of street children
* Providing the first medical aid
* Motivational consultation aimed at bringing the children back to their families and orphanage houses
* Motivational consultation aimed at HIV diagnostics, healthy way of life, stop using drugs
* Providing clothes and food
* Transportation of seriously ill children to medical institutions


Protection program for girls....

Providing help to the girls who suffered from violence and to the vulnerable families to prevent from violence. The following initiatives are realised:

* Providing the first medical help
* Inspection of the gynecologist
* Providing shelter (crisis center)
* Consultations of psychologist; consultations to the families directed at revealing the problems; work of the psychologist with relatives
* Rehabilitation program
* Legal support
* Development and spread of information materials on STD, ways to protect oneself, gender relations

Summer Camps

During the summer period health and rehabilitation camps are organized for street children and children from vulnerable families.

children have the opportunity to rest, improve their health, and acquire the knowledge and skills needed in the community, by means of  specially developed training and educational games.

Art Club at ABC Charity

Plasticine modelling is a very useful past-time for the kids, as it helps them to develop sticking power, concentration, spatial awareness and imagination. Anna Aleksandrova, a teacher in the "Art Club", helps the kids to show an interest in plasticine modelling. With plasticine and other natural materials the children made many interesting things. July made a plastic hedgehog by sticking in pine needles. The exhibition of these hand-made articles was very striking!

March 2012...

In Ukraine, a city adapts to the needs of children....

VINNYTSYA, Ukraine, 4 March 2012
Sasha had had to study at home. She is wheelchair-bound, and school buildings were not fit for students like Sasha – children with disabilities.

"I wanted to study with other children"

Sasha's days were dull. She lacked normal communication with her peers. It was particularly painful for her to hear exciting stories about school life from her best friend Nastya. She felt trapped outside interesting events and adventures.

"I've been using a wheelchair since early childhood, but it wasn't until the time to go to school that I realized: I won't be able studying in the classroom, at school with other kids," she explains. "Of course, I am very grateful to my first teacher, who gave me very good basic education to continue my learning, but I wanted to study with other children."

A school adapts.

This past summer, Vinnytsya school 33 was adapted to the needs of children with disabilities. A wheelchair ramp was built, and a street-level classroom and bathroom were modified.

These and other improvements were possible thanks to the Child Friendly Cities Initiative. Under the initiative, in partnership with local NGOs and municipalities, ABC Charity contributes to changes that make children's lives in cities more comfortable and safe, including the lives of children with special needs.

Partial or full integration of children with special needs into educational establishments, as well as introduction of inclusive education, are key areas for ensuring the right of these children to accessible quality education.

"You cannot even imagine how happy I am!" says Sasha. "I finally got an opportunity to meet my classmates, to study with them, to communicate....It is so delightful to be a part of the group…I started a new life as I became more independent: I can freely move around the school's ground floor and eat in the cafeteria. When we have outdoor health and safety lessons, we all go to the stadium, and my classmates help me. Sometimes they ask me to help with homework, and I am always there for them."

Sasha is actively involved in her school's public activities. She is a member of the children's advisory board of the Vinnytsya city council, where she raises issues that concern her, her friends and other children with special needs. She attends hobby groups at the Vinnytsya city palace for children and youth. Sasha also attends professional swimming practices.

According to Vinnytsya partners, during 2012, two projects – 'Studying on equal terms' and 'Offer a hand to your classmate' – reached more than 100 of the 226 children who study at home in Vinnytsya and integrated them into educational and pedagogical processes.

Monitoring conducted in October 2012 shows that, during academic year 2011–2012, similar numbers of children are partially attending classes and/or extracurricular activities at schools that provide general education. In addition, during 2012, more than 20 children with special needs have participated in various hobby groups and circles, organized at the palace for children and youth.

Eight educational buildings in the city of Vinnytsya are now equipped with wheelchair ramps. Two schools have modified street-level classrooms and toilet facilities to ensure free and easy access for children with disabilities. Special training sessions have been organized for teachers, parents and students to create a favourable school climate for children with special needs.

"There is nothing impossible!" says Sasha. "Do not stop. Do not lock yourself up at home with your problems, but move forward! There are many caring people around you who are ready to help and make our city more friendly to all children."

Sasha hopes that the opportunities that have emerged for her and other children in her hometown will be available throughout Ukraine.

Professional orientation program

Practically all the teenagers have difficulties while choosing a profession, but for orphanage children it is a special topic as often they don't take part in this choice. And the choice itself is often made not according to their interest or abilities, but due to such factors as ease of entering a college, additional benefits, campus existence etc.
And so a conversation about professional future, answer to such questions as "What are you interested in?" or "Who do you want to become?" causes significant difficulties and lack of understanding for our students.
Professional orientation program is based on the areas of interests that were revealed during the classes. Children clarify their interests and identify a professional sphere where they can fulfill themselves. Then they get in touch with the future profession in practice, prepare for the entering to a professional college and get a job.


September 2014...

Youth Programme starts

The mission of the Youth Program is to afford a follow-up care for young people getting out of care of their families and foster parents within ABC Children Village program and to support them during the early years of their independent life.

 

The program has three stages:

First stage is preparing the child for leaving ABC families and foster parents:
- Professional guidance;
- Helping choose the future place of vocational training;
- Teaching social and living skills for independent life;
- Setting time and conditions of leaving care of ABC-families and foster parents.

Second stage, includes individual support for trrns after leaving care of our families and foster parents. The teens can receive financial support for the purposes of vocational and other training, getting practical experience and housing rental.

Third stage is one-year support at the first workplace.

Our organization regularly receves various kinds of benefit actions. Sure, the financial side of the actions is very important, but we get much more than donations. We meet real friends! Many people, who donated as much as they could, stay after that with us and help the organization in solving important problems. For instance, many people are engaged in kids activities, help in filling up moms free time, make performances and concerts in hospitals, support the foundation in benefit events, and bring their friends. And that is precious! We do cherish all your help!


Problems of children's Oncology Departments in Russia.


The problems of children's oncology are subject of special consideration in the whole world, as a child's life is a sacred notion. In recent years children's oncologists have made significant progress in combating the diseases that once used to be considered to be incurable.

As a result of right and timely treatment 80% of children diagnosed with lymphoblastic leucosis, 90% with lymphogranulomatosis (Hodgkin's disease) and 90% with kidney tumor recover. More than 50% of children who have cancer can become full citizens of their country, if they receive timely and qualified help.

The right treatment, though very expensive, can lead to a child's full recovery. Today, there are more than 250 000 people across the world who have recovered from childhood cancer.

In Russia, children's oncology faces many problems that prevent timely and appropriate treatment.

The major problem: underfinancing which means lack of medications and equipment and a shortage of qualified medical personnel.

Only a few departments in the Russian Federation comply with modern treatment demands and are capable of providing expensive high technology treatment and diagnostics.

According to the Russian Health Ministry's data, 3000 children develop cancer annually. This figure is at least 1500 less that provided by epidemiological estimations. It means that at the first stage, doctors fail to detect 25% of children's cancer cases. Without early diagnosis and treatment treatment, cancer is, undoubtedly, a fatal disease.

A bone marrow transplantation, often the only treatment which can save a child's life, costs from US $20,000 to $40,000. Accordingly, underfinancing accounts for the fact that transplantation in the Russian federation is 50 times less frequent than needed. In many cases it deprives a child of their chance to live.

The problems of children's oncology are subject of special consideration in the whole world, as a child's life is a sacred notion. In recent years children's oncologists have made significant progress in combating the diseases that once used to be considered to be incurable.

As a result of right and timely treatment 80% of children diagnosed with lymphoblastic leucosis, 90% with lymphogranulomatosis (Hodgkin's disease) and 90% with kidney tumor recover. More than 50% of children who have cancer can become full citizens of their country, if they receive timely and qualified help.

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The right treatment, though very expensive, can lead to a child's full recovery. Today, there are more than 250 000 people across the world who have recovered from childhood cancer.

In Russia, children's oncology faces many problems that prevent timely and appropriate treatment.

The major problem: underfinancing which means lack of medications and equipment and a shortage of qualified medical personnel.

Only a few departments in the Russian Federation comply with modern treatment demands and are capable of providing expensive high technology treatment and diagnostics.

According to the Russian Health Ministry's data, 3,000 children develop cancer annually. This figure is at least 1,500 less that provided by epidemiological estimations. It means that at the first stage, doctors fail to detect 25% of children's cancer cases. Without early diagnosis and treatment treatment, cancer is, undoubtedly, a fatal disease.

A bone marrow transplantation, often the only treatment which can save a child's life, costs from US $20,000 to $40,000. Accordingly, underfinancing accounts for the fact that transplantation in the Russian federation is 50 times less frequent than needed. In many cases it deprives a child of their chance to live.

The problems of children's oncology are subject of special consideration in the whole world, as a child's life is a sacred notion. In recent years children's oncologists have made significant progress in combating the diseases that once used to be considered to be incurable.

As a result of right and timely treatment 80% of children diagnosed with lymphoblastic leucosis, 90% with lymphogranulomatosis (Hodgkin's disease) and 90% with kidney tumor recover. More than 50% of children who have cancer can become full citizens of their country, if they receive timely and qualified help.

The right treatment, though very expensive, can lead to a child's full recovery. Today, there are more than 250 000 people across the world who have recovered from childhood cancer.

In Russia, children's oncology faces many problems that prevent timely and appropriate treatment.

The major problem: underfinancing which means lack of medications and equipment and a shortage of qualified medical personnel.

Only a few departments in the Russian Federation comply with modern treatment demands and are capable of providing expensive high technology treatment and diagnostics.

According to the Russian Health Ministry's data, 3000 children develop cancer annually. This figure is at least 1,500 less that provided by epidemiological estimations. It means that at the first stage, doctors fail to detect 25% of children's cancer cases. Without early diagnosis and treatment treatment, cancer is, undoubtedly, a fatal disease.

A bone marrow transplantation, often the only treatment which can save a child's life, costs from US $20,000 to $40,000. Accordingly, underfinancing accounts for the fact that transplantation in the Russian federation is 50 times less frequent than needed. In many cases it deprives a child of their chance to live.

Problems of Families with children Fighting Cancera.

According to the Russian Health Ministry's data, the annual amount of children developing cancer equals 3000. This figure implies children suffering from unbearable physical pain, children on operating tables. This figure implies parents whose mental anguish is inconceivable; mothers smiling to conceal pain and fear for their child's life; mothers to their child's last breath hoping for the miracle of recovery.

Do families with cancer children receive sufficient help from the state? Unfortunately, they don't. According to a poll of parents conducted by the children's Oncology Institute, disability pension for children diagnosed with cancer totals 450-600 roubles (US$ 15-20) per month.

These families' financial position is miserable. Russian families come from distant parts of Russia and find themselves in a particularly difficult situation.

Cancer treatment is a long process, taking from seven months to several years. During this period mothers have no opportunity to work and have to live on the miserable allowances they receive. Added to this, due to the shortage of funds in Russian hospitals, parents often have to buy expensive medications themselves, as well as needing money to nurse the sick child and buy him food. Lack of money for everyday needs is a problem for all these families.

The difficult financial position is aggravated by parents' permanent stress, caused by the child's disease.

  Press...

Helping Hand at children's Cancer Hospital.

By Kimberly O'Haver

Special to The Moscow Times

Early one Friday evening, the corridors of Moscow's Institute for Pediatric Oncology are quiet. Jamila Petrova leads the way to the nurses' room. Along the way, we pass two boys with caps covering their bald heads batting balloons, oblivious to the intravenous tubes connected to their arms.

We stop to talk to a worn-out looking woman whose son's leg was recently amputated. Petrova walks the corridors routinely as part of her work with ABC Charity, which tries to improve conditions for the young patients and to help their families cope with the emotional and financial difficulties of caring for them. She founded the fund after her own son, Murad, developed cancer.

Over a cup of coffee, Petrova pulls out a folded envelope that contains a clipping of an article printed in The Moscow Times about Murad, who was then a patient at the hospital, and his photo. It shows a little boy with a big smile and dark curls.

Since her son's death, Petrova has regularly returned to the hospital to distribute what financial support the fund can provide for children in the bone marrow transplant ward, where the most advanced cases of cancer are treated.

The mothers there are often at their wits' end, scrambling to find enough money to pay for specific treatments. Though medical care is free, many necessary procedures and medicines are not covered by the state health system.

Despite their difficulties, Petrova said the mothers try to look around their children. "They always try to laugh and smile when they are with their children," she said. "They leave their child's bedside and the facade quickly fades. Their strength melts, and they cling to the walls, crying hysterically."

According to Health Ministry data, approximately 3000 children are diagnosed with cancer each year. However, other reports place this number at more than 5000.

In Russia, bone marrow transplants -- often the only effective treatment -- are only performed half as often as is necessary. The reason: a chronic lack of financing for children's cancer research and treatment. A single bone marrow transplant costs between $20,000 and $40,000.

Petrova says the emotional trauma the parents in the hospital experience can be severe. Cancer treatment takes an average of seven months to a year, but the mothers who come from the regions do not have access to proper housing in Moscow. A so-called "mothers' room" at the hospital is a hodgepodge of lockers, a few beds and a couple of hot plates. The only support the mothers get from the government is detskiye dengi, or children's money, which amounts to less than $15 a month.

ABC Charity has received a donation of $9,500 from the American Women's Club, and a handful of Americans and Britons make donations each month. Petrova also contributes to the fund from her own income as a Russian-language teacher to foreigners.

Petrova has secured donations of small television sets for the children in the ward and has procured a new refrigerator as well. Her immediate quest is to find someone to donate and install an air conditioner for the bone marrow transplant ward.

The Moscow Times, Aug, 13, 2015, Page 10.

Kids get Scottish help

The Russia Journal (December, 11th, 2015)

In an attempt to raise money for Russian children suffering from cancer - a disease that can be very expensive to treat - the St. Andrew Society of Russia on Nov. 30 held its annual St. Andrew's Day ball in the Renaissance Hotel. The ball was held in support of ABC Charity. The Fund was registered in February of this year and works to helps Russian children afflicted with cancer. The Fund is currently a sponsored charity of the St. Andrew Society of Russia. Up to 5,000 Russian children are diagnosed with cancer every year, and, often, the funds and equipment necessary to provide adequate treatment are unavailable. In honor of St. Andrew - the patron saint of Scotland and Russia - musicians, including a bagpiper and guest speaker and a haggis were flown in from Scotland to provide entertainment.

The St. Andrew Society of Russia has been operating since 1994 and has held a ball every year, always for charity. This is the first year ABC Charity has been involved, however.

Tickets went for $135 or $1,250 for a table of 10, and the ball was sold out, according to the Society's Web site. All proceeds, after the ball itself was paid for, went to charity. David Jenkins, chieftain of the St. Andrew Society of Russia, said that a raffle held at the event brought in $12,000, which was a "fantastic" result.

Jenkins urged people interested in Scotland to get involved in the Society. "Is you're Scottish in Russia and want to be involved in the St. Andrew Society, please contact us," he said. "Many people who are Scottish or interested in Scotland don't even know it exists."

The Russia Journal, December 11th, 2015.




March 2016...




22 March 2016. In Lviv.
The team arrived at the hospital to meet Dr. Olas Voljak, Director, Dr. Yarema Voznytsia, Head of the Paediatric Department and Dr. Olga Liganova, Pulmonologist.

The programme of clinics in Lviv, Ivano-Frankovsk and Ternopol, which had been negotiated provisionally in advance (mainly by mail in Russian), was agreed and arrangements for a conference in Lviv discussed. This would take place on the last full day of the visit. Participants would now include 2 senior representatives of the Ministry of Health from Kyiv, the Head of the Lviv Regional Health Administration as well as the Director of the Lviv Regional childrens Hospital and the Head of the Lviv Genetics Research Institute. Olga Liganova had found 2 sponsors for the conference - Solvay Pharma and Delta Medical, which would prove very helpful in paying for families on low incomes to come to Lviv.

We had given much thought to the objectives of the project and how making films or video might be used. We had asked our Lviv colleagues to establish a link with the local media with the hope that they would make a significant programme for use in Ukraine by medical staff in training, diagnosis and treatment, to provide information to families and to exhort Government authorities to allocate more resources to the care of patients.
It was therefore a pleasure to find 2 reporters at Dr. Voljak's office at the initial meeting, willing to report on the local TV station the arrival of the British team and its purpose. But we wished to pursue the greater aim of a "Ukrainian film". The 2 reporters enthusiastically accepted the idea and within an hour had arranged for a suitable team from their company to come to Dr. Voljak's office.

Discussions took place, with Dr. Voljak's active encouragement, with Ludmila Maior of the Lviv Authority TV and Radio Company. It was agreed that a film crew would cover the Lviv Clinic on 26th April, the conference on 27th April, that all UK team members were available for interview and that Emma Dixon would be willing to give a physiotherapy demonstration - but the content of the programme or film should remain under Ukrainian direction. Ludmila Maior offered to have the programme ready by the end of May. CHI offered to pay for copies of the programme, per the project budget.

Whilst the project submission to HLSP had included the costs of various educational materials for use in Ukraine (e.g. posters and leaflets), the precise items to be produced required negotiation and agreement. Posters did not seem to be a good choice. There was much support from all sides to translate a document entitled "Clinical guidelines for the care of children with Cystic Fibrosis", published for the use of all medical staff by the Royal Brompton and Harefield NHS Trust. This is some 90 pages in length but covers all aspects of diagnosis, treatment and British organisation. The estimated cost of translation and copying (50 copies) was $600, with no copyright problems – and we were very pleased when Dr. Andreas Jemelkin, on behalf of Solvay Pharma, agreed to sponsor this initiative.

The team under Ludmila Maior agreed to include a news item in the evening TV news and Dr.Volkov gave an interview.

MUKOVITSIDOZ (Ukrainian for cystic fibrosis) - first case. In Lviv. A much underweight girls. Diagnosed with at 2 months. Weighing only 14 kg. Subject to "aggressive" massage. The RBH view that gentler, consistent chest physiotherapy would be much more effective was resisted by local pulmonologist. Both sides demonstrated their techniques. RBH recommended immediate hospitalisation for a minimum period of 28 days with specific advice on antibiotic treatment and intramuscular injection of Vitamin K plus at least 7 oxygen treatments per day - 3 by day and 4 by night. Conclusion - very seriously ill patient, whose physiotherapy treatment might be changed to excellent effect.

Institute of Hereditary Pathology, Lviv. From the number of pre-natal tests carried out by the Institute, it could be concluded that about 600-800 children are born per year in Western Ukraine with CF. Laboratory equipment and techniques were discussed relating to CF gene mutations and one interesting scientific paper was discovered relating to a patient known to the RBH team. We met the Director of the Institute, Professor Oleg Hnateiko, Dr. Hayane Akopyan and Dr. Halina Makukh.

23 May 2016. In Ivano-Frankovsk.
Ivano-Frankovsk is 150km southeast of Lviv, almost in the foothills of the Carpathian Mountains, and an Oblast centre. Our party to Ivano-Frankovsk included Dr. Olga Hinka of Dzvin and Ilarion Yaremchuk, Solvay Pharma Representative in Kyiv. We travelled in a 10 seater mini-bus through rural, rolling countryside in full blossom with farming activity very evident. Apart from the use of horses for ploughing and travel, chickens, geese, turkeys, ducks seemed to be everywhere - not to mention some picturesque storks nests!

Our business was based at the Regional children's Clinical Hospital and CF children with their parents from 2 other Oblasts, Chernivtsi and Zakarpattya, had come for consultation with the RBH team.

In her welcome, the Chief Doctor informed us that each year they expect about 10 CF children to die in their first year of life – which seemed a high and unacceptable mortality rate. With uncertain national statistics - officially over 500 children in Ukraine diagnosed with CF versus the likely figure of about 3000 cases - she also informed us that the local incidence of CF was higher than the national average at 1:920 (national figure 1:2300). This was due to in-breeding - marriage between relations. It was agreed that the clinic would require at least two rooms - for consultation with Dr. Volkov and to give physiotherapy - and that all parents would be convened for a final session, both to talk with them and to answer their questions about CF.

Mostly local Doctors presented their cases but there were never less than 10 doctors present to hear the diagnosis and prognosis. Many children were seen with these points arising:

* One child had had his diagnosis confirmed in faraway Moscow.
* The main enzyme, is under-used or taken in adequate doses owing to its expense. Its cost is disproportionate relative to family incomes
* Antibiotics, such as ciprofloxacin, can be prescribed and administered when judged necessary by parents. Ukrainian Doctors were recommended to permit greater "self-medication", which, in turn, should reduce the subsequent need for IV feeding.
* Most patients referred to Emma Dixon for chest physiotherapy - to help the child, to show local medical staff and parents recommended techniques.
* Most diagnoses had included a sweat test.
* Patients records often recorded in "exercise" books - no sign of any computerisation of records.
* Cost of a nebuliser, CREON and relevant antibiotic far beyond any family’s means. Cost is a total of 3442 Gryvna plus $150 for the nebuliser or 4200 Gryvna ($540) - Doctor’s salary in Lviv is 220 Gryvna a month. And often paid late.
* Young girl, Anna, aged 1 1/2 years, would be prescribed drugs costing Gryvna 22,000 per year - compared to average annual income for two working parents of Gryvna 6000 per year.
* Even when it proves very difficult to confirm a diagnosis of CF, a recommendation to "treat what you find" - associated with the case of a 7 year old girl, suspected to have CF but treatment stopped 6 months ago. Diagnosis now confirmed in this clinic - suspension of treatment unfortunate. Immediate admission to hospital recommended in order to compensate for "lost time".
* Boy aged 4. Elder brother had died from CF. Not taking continuous oral antibiotics to counter staphylococcus aurelia
* Intake of Creon seldom exceeds 4000 units per kg weight per day. This should be a minimum and, if affordable, doses up to 7-9,000 units are recommended as this helps sustain a child's weight and promotes better health.
* A 6 month old girl who had received no treatment at a small local hospital, now presenting for the first time at this clinic. Only 2 days worth of antibiotics available to treat her. Probably $1000 needed immediately to save her.

24 September 2016. In Ternopol.
Ternopol is 135km East of Lviv and on the road between Lviv and Kyiv. It is an Oblast Centre - much of the local economy relies on agriculture. The clinic took place at the Regional children's Hospital at Academician Zakharov Street. children and their parents from 2 nearby oblasts, Rivne and Khmelnitsk, had been invited to attend the clinic. On arrival, we were welcomed by the Deputy Head of the hospital, Dr. Alla Petrovna Kazanchuk. She mentioned that her hospital and the regional children’s hospital in Lviv are the only 2 hospitals in Ukraine to be members of the World Association of children's hospitals. The hospital has 405 beds. At any one time, up to 150 mothers may be temporarily accommodated at the hospital. There are 24 departments, 140 physicians in a total medical staff of 900. children with CF are dealt with in the Immunological or Gastro-enterological Departments and most see a geneticist. The hospital has a department of 24 physiotherapists, including 2 doctors, but no one specialising in CF.

The team returned to Lviv. In terms of the costs of a high fat diet, a brief visit to the local market was undertaken to assess the prices of certain products, to help the RBH dietician to make appropriate local diet recommendations.

25 October 2016. in Lviv – Clinic.
30 children were expected at the clinic as well as the TV station team to continue shooting their film. The start of the clinic was advanced and other steps taken to accommodate this large number. Dr. Kronov ensured that we managed matters as efficiently as possible.

Points arising from the clinic:

* Boy aged 16 years: had consultation with Dr. Volkov in 2010 and been prescribed Prednisolone. Parent considered overall condition much as in 2015. Disappointingly, recommended physiotherapy technique in 2007 had not been adopted. Boy had had no time off school owing to CF. Recommendation – 4 courses of IV antibiotics per year – ideally, Ciprofloxacin. Treatment for this boy, antibiotics alone, would cost about 22,000 Gryvnas per year versus family income of about 2500 Gryvnas.
* Girl aged 11. Diagnosis of CF unconfirmed; up to the age of 9, suspected asthma. 2 sweat tests had indicated 80 and 91 Cl. No CF gene mutation revealed by genetic analysis. Pancreatic sufficient. Chest X-ray cause for concern – therefore no need to take CREON, as she does currently. Detection of S. Aureus – rare in an 11 year old CF patient. Some impairment of hearing. Likely diagnosis – Primary Ciliary Dyskinesia, which should be confirmed by electronic microscopy and nasal nitric oxide analysis. Parent advised that CF very unlikely to be cause of child’s ill-health. She might lose up to 74 Gryvna/ month in allowances, unless the PCD also qualifies for allowances.
* Small girl, aged 6 years 8 months, single parent mother. Diagnosed with CF at 4 years. Df 508 mutation. Growing pseudomonas since January 2010. Preferred antibiotic of Flucloxacillin, at a dosage of up to 9 gm per day, not available. So maximum dose of Clarithromycin, which she can tolerate, recommended – alternatively a regime of 4 days in 14 might be more affordable. Parent from Lutsk made special appeal for financial help and video interview with her was recorded. Her written appeal is at appendices
* Many children with CF have poor dental condition; if such services in Ukraine are free, they should be used.
* Another parent’s view of care of a 10 year old CF boy was the subject of a video interview. They lived in Rovno, some 200km from Lviv.
* Another couple, with a small girl CF patient, also came from Rovno. The father estimated that, in a population of 900,000, with just one diagnostic centre and a geneticist in charge, there were about 15-20 cases of CF. His personal view was that Doctors and parents were poorly informed about CF.
* Encouraging signs that children in Lviv are being diagnosed earlier with CF and hence are in a noticeably healthier state.
* The unaffordability of drug/enzyme treatment is illustrated again in a letter from Dr. Kronov prescribing treatment for a 3 1/2 year-old boy, Ridvan. Cost of a nebuliser plus treatment, in this example with modest CREON needs, is 4245 Gryvna per year versus the family income of 2040 Gryvna.

About lunchtime, Dr. Andreas Jemelkin, Solvay Pharma Product Manager for Central and Eastern Europe, Dr. Marina Surenkov, Product Manager for CREON in Ukraine, Olyena Gutsalo, Assistant Product Manager and Maxim, Public Relations officer together with Dr. Ilarion Yaremchuk, Pharmaceutical Representative based in Kyiv, arrived to observe the clinic and attend the following day's conference.

We were joined too now by Vera Viktorova, Chairman of the Kyiv CF Parents support group, 3 representatives of an embryo parents support group from Dnepropetrovsk and a team of 4 from Kharkhov, Eastern Ukraine – Olesya Botsyura, mother of a 4 years-old CF child, another parent, and two doctors. They had recently formed a new parents support group in Kharkhov, been registered as a charity and membership has grown quickly to 36 parents and 4 doctors. Olesya commended the medical support provided but considered that the Doctors had insufficient information on CF. She was provided with a copy of the RBH Guidelines and several CF Trust publications.

26 March 2014. Lviv. Conference
The conference attendance was about 100, of whom the vast majority were doctors or geneticists. Despite our request that nurses, physiotherapists and parents should be well represented, there was no specialist physiotherapist or nurse in the auditorium and just some 6 parents present. However, 3 of the parents were chairmen of parents support groups and more than compensated, by the end of the conference, for the relative lack of parents by their emotional and heartfelt speeches.

The project manager had a 5-minute "slot" and spoke in Russian (This was quite acceptable to the conference and saved some interpreting: however, Ukrainian is very much the preferred language. Memories of Russian and Soviet military actions and other repressive actions linger in the memory). Apart from thanking sponsors, organisers etc, his main message was one of encouragement to the parents support groups; to be really active to improve the care of their children and to fight for more affordable drugs.

One of the most interesting questions concerned openness with children and families about imminent death. Dr. Volkov believed that total openness should be the approach. Fear of death was worse than death itself. It was no use trying to deceive children and usually they had quite specific wishes, once they knew that death would come soon. It was the RBH policy to comply with such wishes if possible. It was also policy to make death as painless as possible, using morphine, which in itself might hasten death. It seemed that this approach caused some difficulties on the Ukrainian side – perhaps insufficient morphine supplies to enable death always to occur without pain.

Dr. Kronov presented a paper "Clinical and Social aspects of CF in the Western Region of Ukraine and ways of solving the problems".

Dr. Halyna Makhuk's presented a paper on the results of genetic analysis of local CF patients entitled "The mutation analysis of CFTR gene among CF patients from Western Ukraine".

Dr. Jarema Vosnitsa's paper described how the organisation had changed and improved over the past year. In particular, he had asked the Regional Health Authority to improve the knowledge in smaller local hospitals.

Liga's paper about the kinds of infection found with patients and the antibiotics used is not held. In the brief time that slides were screened, the proportion of patients with bacterial infections was:

Staphylococcus Aureus 42.2%
Pseudomonas Aeruginosa 26.7%
Haemophilus Influenzae 8.8%
Other bacteria 22.3%

Lauren Shea gave a presentation on diet, relevant to Ukrainian children and emphasising the importance of a high fat diet. (This was described by Dr. Kronov as a "revolutionary" lecture – saying that she agreed with the advice and had been trying in vain to get the same message across).

The Lviv team had prepared a press release and invited the press to attend the conference. The local TV Company continued to shoot material for their film.

After a buffet lunch, sponsored by Delta Medical, the last part of the conference was for discussions and statements.

On behalf of Solvay, Dr. Surenkov said Solvay would strive at Government level to have classified as a "life-dependent" drug and that consequently it would be available to patients free of charge.

Regret was expressed that key Government officials, especially Mrs Moiseyenko, Head of the Department responsible for the health of mothers and children in the Ministry of Health in Kyiv, had not after all been able to attend.

Chairmen of parents support groups sought the help of the press in their campaign and expressed the hope that Solvay would also back them.

Finally, tribute was paid to the invaluable and superb contribution of Dr. Igor Hritsyuk, the team's interpreter for the week, both in clinics and at the conference. Without his fluent command of English, his medical competence and his knowledge of medical terminology in both languages, very little could have been achieved.