The ‘Ideological Guard Dnipro’ Charitable Foundation launches a series of large-scale fundraising events aimed at meeting the needs of children’s physical rehabilitation and technical equipment for the treatment of exacerbations of rare (genetic) diseases. At the moment, we are conducting our first fundraising campaign to raise funds for the newly created reference center in Dnipro.

Cystic fibrosis… Two simple words that hide a complete abyss. Our team has carefully studied the publicly available information about this genetic disease. According to open-source data, the average life expectancy of children with fibrosis in Ukraine usually does not exceed 24 years. Moreover, some clinical cases that we learned about before preparing to launch the campaign indicate that sometimes children do not even live to adulthood (also mentioned here). This is a tragedy. For every family. For every child with this diagnosis.

At the same time, there are precedents in European countries where the life expectancy of patients is much higher – up to 50 years. That is why we are starting a cycle within the program to support children’s healthcare facilities with this issue.

In the city of Dnipro, a reference center will soon be opened at the 6th Children’s City Hospital, which will bring together a multifunctional team specializing in such diseases. However, the process requires technical equipment to improve the effectiveness of medical interventions and, in the long run, to significantly affect the quality and life expectancy of children. At the moment, 35 young patients are diagnosed with cystic fibrosis, and another 9 have chronic lung diseases. Since the beginning of the full-scale invasion, more than 3,000 children from the war zone and the temporarily occupied territories have received the necessary assistance.

The project targets children from the city of Dnipro and evacuees from the war zone who suffer from cystic fibrosis. According to official statistics, there are more than 466,000 registered IDPs in the Dnipro region, including approximately 100,000 children, who will also receive qualified medical care in the city’s hospitals.

A successful approach to the problem is determined by the sum of two factors: early diagnosis (which saves so much time for patients) and the elimination of exacerbations using innovative equipment in combination with physical exercises.

For a long time, our team has been involved in a multilateral process of negotiations on the possible supply of the Simeox device, which is designed to increase the patient’s breathing volume and reduce (or even eliminate) exacerbations. As a result, we can now expect a centralized supply of this device to Ukraine thanks to the joint efforts of several organizations.

However, the issue of diagnostics remains open, as the effectiveness of doctors’ efforts depends on early detection of the problem. To diagnose cystic fibrosis, there is an innovative device from the American company Wescor called Nanoduct. The cost of this device together with complete tests is UAH 369,500.

A complete diagnosis of acute lung diseases is also impossible without a spirograph. In order to meet the needs of patients, it is necessary to purchase a Spirobank II Advanced spirograph, the cost of which, including a pulse oximeter and spare modules, is UAH 59,800.

It is also planned to purchase at least 10 Pari O-PEP respiratory simulators, which the hospital will provide free of charge to families with children suffering from cystic fibrosis. The cost of 10 units is UAH 32,000.

The total cost of the project is UAH 461,300.

The planned implementation period is until 30 April 2024.

Today, in times of war, we must redouble our efforts and not leave children and their families alone with a disease that is slowly killing them. You have a chance to build a road to a new life – where children can do more. Do not miss it.

Don’t wait for change to happen – make it happen. Join us in shaping the future of paediatric medicine.

See the presentation below for more information.

You can also support the project on this page.

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