Physical Health Ukraine Project #54000

Supporting Rare Disease Patients

by CF Orphanni Synytsi

Project Report | Apr 15, 2022
A concentrator for a baby with rare disease

By Tetiana Zamorska | Executive Director

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.

Links:

Story on our FB page

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Apr 8, 2022
An oxygen concentrator delivered before the war

By Tetiana Zamorska | Executive Director

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

Links:

post about Yulia on the FB page of CF Orphanni Synytsi

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Dec 30, 2021
4 children received medical respiratory equipment

By Tetiana Zamorska | Executive Director

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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