Physical Health Ukraine Project #54000

Supporting Rare Disease Patients

by CF Orphanni Synytsi

Project Report | Nov 6, 2024
A Breath of Hope for Yehor

By Tetiana Mykhailova | Executive director

Oxygen concentrator for Yehor, 17 y.o.

Dear friends,

We are truly grateful to share some heartwarming news and extend our deepest thanks to all of you who helped us secure an oxygen concentrator for 17-year-old Yehor from Dnipro.

Yehor is a brave young man who has been battling a severe genetic condition called cystic fibrosis since birth. This disease makes even the simplest act of breathing a challenge, as it causes thick mucus to build up in his lungs, constantly blocking his airways and making him vulnerable to frequent infections. Every day is a fight for Yehor — a fight for breath and for the energy to keep going.

With your support, we were able to provide Yehor with a new, personal oxygen concentrator, a device that has become essential for him. This concentrator supplies his body with the extra oxygen he needs to breathe easier and live more comfortably. Having his own device is not only a matter of convenience but a necessity, as shared equipment could expose Yehor to dangerous infections that his body would struggle to combat.

Yehor’s daily routine includes intensive treatments such as inhalations, physiotherapy, and specialized medications to support his breathing and digestion. Despite all of this, nothing can fully substitute the life-sustaining oxygen that he now has access to at home — thanks to your kindness.

Your generosity has allowed Yehor to remain at home, surrounded by his loved ones, rather than in a hospital. You have given him more than just a piece of equipment; you have given him hope, a vital breath of life, and the strength to keep fighting each day.

We are sincerely grateful for your compassion and for standing by Yehor and his family in this journey.

With heartfelt thanks,

Tetiana Mykhailova and the CF Orphanni Synytsi team

Permalink

Sep 10, 2024
Medical aspirator for little Sofia

By Tetiana Mykhailova | Executive director

Sofia`s mom in front of the hospital

Dear friends,

We want to share some good news and express our deepest gratitude for helping us purchase a medical aspirator for little Sofia, who has recently turned 1 year and 5 months old.

Sofia is the third child in the family of Natalia and Viktor. The doctors initially did not recognize Natalia's concerns about her daughter’s health, but when Sofiia was referred to the National Children's Specialized Hospital OHMATDYT, it was discovered that she has a rare and serious condition called Krabbe disease, infantile form. This is a genetic disorder that affects the nervous system and leads to severe issues, including the loss of motor skills, vision, and hearing.

By the time Sofia was diagnosed, she was already 8 months old, and the disease was progressing rapidly. The situation was further complicated by the fact that the family had to leave their hometown of Myrnohrad in the Donetsk region due to ongoing shelling. To continue Sofia’s treatment, the family relocated to Dnipro city, where she receives specialized medical care. Sofia and her mother Natalia have been living in the regional children’s hospital for several months now, as Sofia requires constant oxygen support.

Sofia’s family is eager to take her home from the hospital. However, in order to care for her at home, they need an oxygen concentrator, an aspirator, and a specialized pulse oximeter for in-home use, all equipped with batteries for uninterrupted use during power outages in the wartime in Ukraine.

Thanks to your generous donations, our foundation was able to purchase an aspirator with a built-in battery for Sofia.
Despite all the difficulties Sofia’s family is facing - an incurable disease, the war, living in another city - the support of the donors means so much to them.

Our foundation can support families like Sofia’s thanks to your charitable contributions to our project on the GlobalGiving. Your contributions make a difference in the lives of Ukrainians living with rare diseases and their families.

With sincere thanks,

Tetiana Mykhailova and CF Orphanni Synytsi team

Medical aspirator for inhome use for Sofia

Links:

Sofia`s story

Permalink

May 21, 2024
3 inhalers and a nasal mask for our donees

By Tetiana Mykhailova | Executive director

3 y.o. baby with cystic fibrosis

Dear friends,

On behalf of the families and patients living with rare diseases, we would like to extend our deepest gratitude for your recent donations. Your kindness has enabled us to acquire crucial medical devices for three children and one adult who are battling rare diseases.

Thanks to your donations, we have purchased three high-performance inhalers for daily home use by patients with cystic fibrosis, as well as a special nasal mask for non-invasive ventilation of lungs(NIVL) therapy for a young man with Prader-Willi syndrome.

For individuals with cystic fibrosis, daily inhalation therapy is life saving. The powerful inhalers you helped provide play a crucial role in delivering medication effectively, helping to clear airways and prevent lung infections, which significantly improves the quality of life and health outcomes for these young patients.

In the case of Prader-Willi syndrome, the specialized nasal mask for NIV is essential during sleep. This equipment helps manage the respiratory complications associated with this syndrome, ensuring that the patient receives adequate oxygen and breathes more easily at night. This support is critical in preventing further health complications and enhancing overall well-being.

Your support is especially significant in the context of the ongoing war in Ukraine. The conflict has impacted our healthcare system, making it exceedingly difficult for many patients to access the necessary medical care and equipment. Your generosity not only provides vital medical assistance but also brings hope and reassurance to Ukrainian families during these challenging times.

We cannot thank you enough for your compassion and support. Your contributions make a profound difference in the lives of those who need it most, and we are immensely grateful for your dedication to helping others.

With sincere thanks,

Tetiana Mykhailova and CF Orphanni Synytsi team

9 y.o. Oleksandra with cystic fibrosis

11 y.o. Iliya with Prader-Willi syndrome

20 y.o. Viktoriya with Cystic Fibrosis disease

Links:

Permalink

1 2 3 4 5 ›

About Project Reports

Project reports on GlobalGiving are posted directly to globalgiving.org by Project Leaders as they are completed, generally every 3-4 months. To protect the integrity of these documents, GlobalGiving does not alter them; therefore you may find some language or formatting issues.

If you donate to this project or have donated to this project, you can receive an email when this project posts a report. You can also subscribe for reports without donating.