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
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
Supporting Rare Disease Patients
Supporting Rare Disease Patients

Project Report | Jan 24, 2024
6m.o. Sofiyka needs medical devices to return home

By Tetiana Mykhailova | Executive director

6 m.o. Sofiyka with Pompe disease
6 m.o. Sofiyka with Pompe disease

Our dear Donors,

We are happy to share our news with you on the project progress in supporting Ukrainian children living with a rare (orphan) disease.

In December 2023 our Foundation purchased a children's nasal mask for using while non-invasive lung ventilation (NIVL) for 6-month-old Sofiyka from Kropyvnytskyi.

The baby was born with Pompe disease. This is a rare (orphan) genetic disorder. It is important to diagnose it in time and start therapy with special drugs and respiratory support.
Without treatment, children develop muscle weakness, particularly in the heart and muscles that help breathe.

Sofiyka was diagnosed at the National Children`s Specialized Hospital “Ohmatdyt” when she was 5-month-old and already developped breathing disorders.

The doctors prescribed her non-invasive lung ventilation (NIVL) when sleeping. The Foundation`s nasal mask has already been used with the hospital medical equipment under the supervision of the doctors of the Children's Sleep Laboratory of the “Ohmatdyt”.

"The baby sleeps better. We slept through the morning feed this morning. We woke up only because the doctor entered the ward. Sofiyka became even rosyer on the cheeks. We thank you very much!" -  Sofiyka's mother wrote to us.

To continue the long-life respiratory care at home, the family has already bought a NIVL divice with the help of local donors. But there is still a need in another special medical device which help to cough (In-Exsufflator). Due to muscle weakness, Sofiyka can choke on liquid and food that she cannot cough up, and they can get into the bronchi causing inflammation.

The cost of such an In-Exsufflator is 5000-6000 USD. The situation is complicated by the fact that any medical equipment for in-home use is not provided by the State health care system in Ukraine.

We would be very grateful if you could make a donation to our Foundation`s project to help us to purchase necessary medical equipment for in-home use for Sofiyka and other Ukrainian rare disease patients in need.

On behalf of patient`s families we sincerely thank all the donors and the GlobalGiving team for continuing support in these challenging times for Ukrainian people.

In the "Ohmatdyt"` Children's Sleep Laboratory
In the "Ohmatdyt"` Children's Sleep Laboratory
Nasal mask for non-invasive lung ventilation
Nasal mask for non-invasive lung ventilation

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Oct 5, 2023
Respiratory medical devices for 3 rare disease patients and a hospital

By Tetiana Mykhailova | Executive director

Jun 8, 2023
5 portable concentrators for orphan patients

By Tetiana Zamorska | Executive Director

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Organization Information

CF Orphanni Synytsi

Location: Kyiv - Ukraine
Website:
Facebook: Facebook Page
Project Leader:
Tetiana Mykhailova
Kyiv , Kyiv Ukraine
$11,056 raised of $50,000 goal
 
281 donations
$38,944 to go
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