Supporting Rare Disease Patients

by CF Orphanni Synytsi
Supporting Rare Disease Patients
Supporting Rare Disease Patients
Supporting Rare Disease Patients
Supporting Rare Disease Patients
Supporting Rare Disease Patients
Supporting Rare Disease Patients
Supporting Rare Disease Patients
Supporting Rare Disease Patients
Supporting Rare Disease Patients
Supporting Rare Disease Patients
Supporting Rare Disease Patients
Supporting Rare Disease Patients
Supporting Rare Disease Patients
Supporting Rare Disease Patients
Supporting Rare Disease Patients
Supporting Rare Disease Patients
Supporting Rare Disease Patients
Supporting Rare Disease Patients
Supporting Rare Disease Patients
Supporting Rare Disease Patients
Supporting Rare Disease Patients
Supporting Rare Disease Patients
Supporting Rare Disease Patients
Supporting Rare Disease Patients
Supporting Rare Disease Patients
Supporting Rare Disease Patients
Supporting Rare Disease Patients
Supporting Rare Disease Patients
Artem (16 y.o.) from Volyn region
Artem (16 y.o.) from Volyn region

Our dear Donors,

We are happy to share our news with you on the project progress in supporting Ukrainian rare (orphan) diseases patients.

Thanks to Your donations, four donees of the Foundation received recently a life-saving medical equipment - oxygen concentrators.

They are Ukrainian patients living with a rare diagnosis Pulmonary Hypertension. This disease affects the heart and lungs, and significantly changes the quality of life. Its treatment is expensive and lifelong, and includes the oxygen therapy. In severe cases patients need a heart-lung transplantation.

We sent oxygen concentrators to Artem (16 y.o.) from Volyn region, Yulia (36 y.o.) who was forced to flee from Bucha to the western part of Ukraine in the first days of the war, Olena (26 y.o.) from Zhytomyr, and Inna (52 y.o.) from Kyiv region.

We are also happy to share with you the words of gratitude of Artem`s mother: "Thank you very much! This is a great help for us, may the God bless you!” 

Because of the war and its impact, rare diseases patients in Ukraine became more vulnerable.Now, with oxygen concentrators, they have  24-hour access to the respiratory in-home care they need.     

Your participation in our project https://goto.gg/54000 makes great encouragement for patients who remained in Ukraine in these hard times. Your support can significantly improve their health and quality of life in the conditions of humanitarian crisis and war in Ukraine.

Warm regards,

CF Orphanni Synytsi

Yulia (36 y.o.) from Bucha (Kyiv region)
Yulia (36 y.o.) from Bucha (Kyiv region)
Olena (26 y.o.) from Zhytomyr
Olena (26 y.o.) from Zhytomyr
Inna (52 y.o.) from Kyiv region
Inna (52 y.o.) from Kyiv region

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Little Anya from Vinnytsya region in Ukraine is only 1 year and 4 months old.

      At the end of the last year, the doctors of the National Children Specialized Hospital OKHMATDYT (Kyiv), diagnosed the baby with a rare diagnosis - Krabbe disease. Anya was planned to be hospitalized again in Kyiv to undergo additional examinations and adjust her treatment if necessary. But due to the war, hospitalization had to be postponed.

      Recently, due to the breakdown in her health, Anya was hospitilized to the intensive care unit of a district hospital in Vinnytsya region. After her discharge from the hospital doctors prescribed an everyday oxygen therapy at home.
      Thanks to the funds raised within our project https://goto.gg/54000 on the international charitable platform GlobalGiving, our Foundation purchased and sent an oxygen concentrator to Anya's family address this week.

On behalf of  Anya`s parents, we would like to thank all the donors for their support in raising funds for life-saving equipment. We also thank to the team of the NGO "Rare Disease Association of Ukraine" for arranging the delivery of the concentrator from Kyiv to Vinnytsya region under the war conditions in Ukraine.

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We are extremely grateful to donors - from Ukraine and abroad - for the support of Ukrainian orphan patients!

A few days before the start of russia`s military invasion, our Charitable Foundation Orphanni Synytsi managed to purchase a 5-liter oxygen concentrator thanks to the funds received from the international charitable platform GlobalGiving and the Ukrainian Philanthropic Marketplace dobro.ua.

This concentrator was delivered to a 26-year-old girl Yulia with a rare (orphan) disease Pulmonary Hypertension. This disease affects the heart and lungs, reduces blood saturation. Its treatment is expensive and lifelong. In severe cases, a lung and heart transplantation is required.

Yulia is from Chernihiv region. After being diagnosed with a rare diagnosis, the young girl became an active member of the Association of Patients with Pulmonary Hypertension (Ukraine). Last year Yulia participated actively in the charity fair of our Foundation for fundraising for oxygen concentrators. Yulia gave her paintings (on the photo below).

Before the war, we posted on our page that we had delivered to Yulia the concentrator, a medical equipment critically needed for daily oxygen therapy at home. And later we planned to publish a post of gratitude to our donors with a photo of Yulia with this  concentrator. But russia's military invasion changed all plans at once…

The war caught Yulia in Kyiv, where she lived and worked at the time. She received the concentrator 5 days before the war started. Because of the danger and missile attacks on the capital and other Ukrainian territories, the girl was forced to flee the country.

Thanks to the support of the European community for people fleeing Ukraine, Yulia is now safe in Italy, where she has received temporary shelter and access to specialized medical care for patients with pulmonary hypertension. Italian TV channel TG2Medicina33 filmed a story about Yulia at the Monaldi Hospital (Naples) - www.fb.com/tg2rai/videos/388905946014564.

Yulia`s paintings
Yulia`s paintings

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Medical inhalers and aspirators for children
Medical inhalers and aspirators for children

Dear friends!

We are happy to share good news on what's been already done by us – thanks to your donations - for supporting people living with rare (orphan) diseases!
4 children with various rare diseases have already recently received special medical respiratory equipment for everyday in-home use.

2 girls living with a rare diagnosis Cystic Fibrosis - Nastya (9 y.o.) from Kyiv and Katya (11 y.o.) from the Kyiv region received powerful inhalers which would allow them to breathe freely, and their families - not to worry because there will be no unexpected missed inhalations.
Nastya and Katya require drugs' inhalations several times a day. Otherwise, their airways cannot remove the mucus that accumulates because of this rare disease. This is why patients with CF often suffer from chronic infections of the lungs and bronchi. Ordinary inhalers do not withstand daily multiple use. Thus, special powerful inhaling devices are of crucial need for such patients.

Special medical respiratory devices are critically necessary for patients with Spinal Muscular Atrophy (SMA) as well.

Ruslan (11 y.o.) from Zaporizhzhia region and Denis (12 y.o.) from Zakarpattia region are both living with SMA. This progressive disease, due to muscle weakness, causes severe issues with breathing and swallowing. When a child is unable to swallow saliva on its own, it should be removed (aspirated) regularly with an aspirator. Otherwise there is a risk of bronchitis and pneumonia. It becomes quite dangerous when a child with SMA gets cough and cold and needs aspirations every 15 minutes. So, with the aspirators that we provided to the boys their families can help them to breathe freely.

On behalf of the families with these girls and boys whom we supported, we would like to thank all the donors for their help in providing these children with life-saving respiratory equipment!

Your further participation in our project: https://goto.gg/54000 and sharing the story of our work with your network would give a chance to enhance the lives of Ukrainian children and adults with rare diseases!

May the New year 2022 bring health and happiness to you and your families!

Warm regards,

CF Orphanni Synytsi

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Our dear Donors! We are happy to share our great news with you on the the project progress in supporting people living with rare diseases ! 

Thanks to Your donations, the first part of life-saving medical equipment was provided to our donees - patients living with rare disease in Ukraine. They received 1 portable and 2 stationary oxygen concentrators (details on https://supportrare.com/project_onglobalgiving_ukr). 

They all have a rare diagnosis – pulmonary hypertension (PH). This disease can affect people of all ages and, unfortunately, it gets worse over time causing the heart and lungs disorder. It cannot be cured but we can help to improve the quality of life of such people. Among other issues, they need oxygen concentrators for everyday oxygen therapy.

Karina is 27. She is from Kyiv, the capital of Ukraine. Despite sufferring from pulmonary hypertension since her childhood, Karina graduated successfully from the university. This young lady, unfortunately, had to stop her professional career of a lawyer because of her illness progression. The doctors recommended a heart-lung transplantation. Still being on the transplant waitlist Karina has to live her life carefully with everyday medications and oxygen support. But Karina is very enthusiastic. She tries to stay active and brighten her life like any other young people. Her great passion is painting. You can enjoy her paintings attached on the photo. 

Lyubov is from Chernihiv, the city to the North of Ukraine. She was diagnosed with PH 6 years ago and now needs a lung transpalntation. Over last few years she took a very active part in the activities of the Ukrainian NGO -  The Association of Patients with Pulmonary Hypertension. Lyubov has a job and wants to stay active as long as possible. So, with the portable oxygen concentrator that we've donated to Lyubov, she will have some mobility and ability to work out of home.  

Alla is from Zhytomyr region of Ukraine. She was born with congenital heart disorder that caused pulmonary hypertension. Every time when her breathlessness worsened, Alla had to go to hospital. Now, with the oxygen concentrator, she has the 24-hour access to the respiratory in-home care she needs.    

Thanks to Your participation in our project https://goto.gg/54000 we have the opportunity to enhance the lives of 3 women with rare diseases! Your kindness makes a great encouragement for patients and their families!

We’ll send you an update through GlobalGiving to share stories of what we’ve been able to accomplish with your great support. If you’re willing to share the story of our work with your network, we’d be incredibly grateful.

Warm regards,

CF Orphanni Synytsi

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Organization Information

CF Orphanni Synytsi

Location: Kyiv - Ukraine
Website:
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Project Leader:
Tetiana Zamorska
Kyiv, Kyiv Ukraine
$9,378 raised of $10,000 goal
 
230 donations
$622 to go
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