Supporting Rare Disease Patients

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

Links:

• Consumables for a lung drainage device for 11 y.o. boy with CF
• An aspirator for a 16 y.o. boy with Duchenne disease
• A nasal mask for 2 m.o. baby with spinal muscular atrophy (SMA)

Our dear Donors,

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

A sense of helplessness overcomes Ukrainian oxygen-dependent rare diseases patients during missile attacks, when it is necessary to make a difficult choice on which their health and life depend. The choice is between oxygen and safety. The choice is either to stay at home and have access to the oxygen provided by a stationary concentrator, or to go to a shelter to escape enemy fire, but risk losing consciousness without the necessary oxygen.

The war, which has been going on for the second year, has changed the way we consider the needs and capabilities of people living with rare diseases. For severely ill patients the lack of oxygen can be worse than explosions of missiles or drones-shaheds. In order to have 24-hours access to oxygen therapy, such patients need portable oxygen concentrators in addition to stationary ones. They can take them to the shelter and breathe oxygen during the air alerts, which can last several hours. The high cost of such medical devices and the lack of the State financing for these needs forces orphan patients to apply to charitable organizations for help.

Thanks to the charitable funds of GlobalGiving, our Foundation purchased 5 mini portable oxygen concentrators with spare batteries:

- for 3 patients with pulmonary hypertension who live in Kyiv and the Kyiv region, where there have been 17 missile attacks over the past month. They are 51-year-old Liliya from the Bucha region, 63-year-old Rafiga from Boryspil and 57-year-old Svitlana from Kyiv;

- for 15-year-old Sofia from the Ternopyl region. As a result of complications of the rare disease mucopolysaccharidosis, Sofia developed a pulmonary hypertension. Its treatment requires oxygen therapy. Thanks to the received portable concentrator, Sofia's mother will not worry, because she will always have access to oxygen;

- for 35-year-old Ttiana from Vinnytsia living with a rare diagnosis tuberous sclerosis. The young woman is forced to live out within the four walls, chained to a stationary concentrator. To go out she needs a portable concentrator and a wheelchair. Tatyana has a daughter, so the opportunity to move around is extremely necessary for her. We hope that now, with a portable concentrator, Tetiana's quality of life will be improved.

Thanks to charitable funds of GlobalGiving, we also provided a pulse oximeter and an inhaler sterilizer for 15-year-old Christina from Zakarpattia region, who has a rare diagnosis of cystic fibrosis. As patients with this diagnosis have an increased risk of developing bacterial infections, the inhaler must be properly disinfected for daily inhalations that last several times a day. Therefore, the sterilizer is a very important device for ensuring proper treatment conditions for such patients.

We sincerely thank all the GlobalGiving donors for supporting Ukrainian orphan patients in these challenging times for our country affected by the ongoing war and humanitarian crisis.

Kind regards,

Tetiana Zamorska

Links:

• 3 mini concentrators for patients with Pulmonary Hypertension
• 2 mini concentrators for rare diseases patients
• medical devices for 15-year-old Christina from Zakarpattia