Children and adults with rare (orphan) diseases that cause chronic oxygen deficiency – pulmonary hypertension, cystic fibrosis, spinal muscular atrophy, tuberous sclerosis – need oxygen concentrators. Without complex treatment, deseases chronically progress, significantly lower the quality of life and shorten the life expectancy.
The average life expectancy of patients with pulmonary hypertension without treatment is 2,5-3 years after being diagnosed. This disease most often manifests in childhood and adolescence. Therefore the oxygen therapy is an important supportive factor of treatment and should be long-term, sometimes lifelong.
Breathing becomes more difficult in case of a congenital disease of cystic fibrosis. Viscous mucus gets stuck in the bronchi, lungs ventilation decreases and, as a result, hypoxia of all internal organs occurs. Children with spinal muscular atrophy are not able to breathe normally because of significant muscle weakness resulting in hypoxia which complicates the course of the main disease.
In order to help children and adults with these rare (orphan) diseases we need to provide them with oxygen concentrators. Depending on severity of the desease course, the optimal concentrators are semi-portable (up to 16-20 kg) or portable devices that gives possibility to remain mobile: children can study offline at school, and adults can work, raise their children and travel. This is especially important when you need to travel for long distances, to go and stay in the hospital.
The number of orphan patients applying to the Foundation for support is constantly growing. The current need is 10 portable and 10 semi-portable oxygen concentrators. We will be grateful for every contribution for supporting our project - for your help to the rare disease patients to breathe, and therefore to live!
*On June 3, 2021, the project budget was increased due to including the value of a stationary 9-liter oxygen concentrator UAH 37,590 to be fundraised for a patient with rare disease tuberous sclerosis.
** In case of insufficient amount of donations for implementation of this project or surplus donations, they will be used for other charity projects of the Charitable Foundation "Orphanni Synytsi" to provide rare disease patients with medical equipment/devices/medicines/rehabilitation and/or for the Help Line project. Amounts of donations are non-refundable. By making a donation, the donor agrees to the specified terms of funds use.