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

By Tetiana Mykhailova | Executive director

A nasal mask for 2 m.o. baby with SMA disease
A nasal mask for 2 m.o. baby with SMA 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.

Since June 2023 our Foundation has provided 3 children with necessary respiratory medical devices:

-  2 m.o. Nefa who has the severe form of Spinal Muscular Atrophy (SMA type1) received a nasal mask for non-invasive lung ventilation. In the first months of their life, children with SMA  may have breathing difficulties due to muscle weakness, therefore they need timely respiratory support that helps their lungs to breathe fully and prevent complications. Nepha needs already such support when she sleeps.

- 11 y.o. Bohdan with Cystic Fibrosis received  special consumables, necessary for the use of a lung drainage device during 6 months. This genetic disorder causes serious damage to the lungs. The regular treatment with the use of such drainage device allows the boy to live a full life - study at school, play his favorite sport and even obtain sports awards.

- 16-year-old Bohdan has Duchenne muscular dystrophy which gradually affects not only the skeletal but also the respiratory muscles. We purchased a medical suction device (aspirator) equipped with a built-in rechargeable battery for Bohdan. The autonomous operation function of this device is very important because of the risks of blackouts of the war, which has been going on for the second year in Ukraine.

In addition, thanks to the GlobalGiving grant, our Foundation provided recently the Center for Orphan Diseases of the Kyiv Regional Children’s Hospital with a NIVL (non-invasive lung ventilation) ventilator and additional accessories for its use at a total cost of more than half a million UAH. The NIVL is critically needed for respiratory support  of children with severe rare diagnosis. Now, this NIVL is used for the little baby with SMA at home under the regular supervision of specialists of the Center. https://www.facebook.com/orphannisynytsi/posts/pfbid0iJKPNJbt1Z49i53Drc5zLbDou4zUS58DwL8gF7XFKaxX4WSQ6UTCwfcbUvcVkyNil

We sincerely thank all the GlobalGiving donors and team for supporting rare disease children in the wartime and humanitarian crisis in Ukraine.

 

Kind regards,

Tetiana Mykhailova

11 y.o. Bohdan with Cystic Fibrosis disease
11 y.o. Bohdan with Cystic Fibrosis disease
16 y.o. Bohdan with Duchenne muscular distrophy
16 y.o. Bohdan with Duchenne muscular distrophy
NIVL for Kyiv regional children`s hospital
NIVL for Kyiv regional children`s hospital

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Organization Information

CF Orphanni Synytsi

Location: Kyiv - Ukraine
Website:
Facebook: Facebook Page
Project Leader:
Tetiana Mykhailova
Kyiv , Kyiv Ukraine
$11,111 raised of $50,000 goal
 
285 donations
$38,889 to go
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