We are happy to share good news on what's been already done by us – thanks to your donations - for supporting people living with rare (orphan) diseases! 4 children with various rare diseases have already recently received special medical respiratory equipment for everyday in-home use.
2 girls living with a rare diagnosis Cystic Fibrosis - Nastya (9 y.o.) from Kyiv and Katya (11 y.o.) from the Kyiv region received powerful inhalers which would allow them to breathe freely, and their families - not to worry because there will be no unexpected missed inhalations. Nastya and Katya require drugs' inhalations several times a day. Otherwise, their airways cannot remove the mucus that accumulates because of this rare disease. This is why patients with CF often suffer from chronic infections of the lungs and bronchi. Ordinary inhalers do not withstand daily multiple use. Thus, special powerful inhaling devices are of crucial need for such patients.
Special medical respiratory devices are critically necessary for patients with Spinal Muscular Atrophy (SMA) as well.
Ruslan (11 y.o.) from Zaporizhzhia region and Denis (12 y.o.) from Zakarpattia region are both living with SMA. This progressive disease, due to muscle weakness, causes severe issues with breathing and swallowing. When a child is unable to swallow saliva on its own, it should be removed (aspirated) regularly with an aspirator. Otherwise there is a risk of bronchitis and pneumonia. It becomes quite dangerous when a child with SMA gets cough and cold and needs aspirations every 15 minutes. So, with the aspirators that we provided to the boys their families can help them to breathe freely.
On behalf of the families with these girls and boys whom we supported, we would like to thank all the donors for their help in providing these children with life-saving respiratory equipment!
Your further participation in our project: https://goto.gg/54000 and sharing the story of our work with your network would give a chance to enhance the lives of Ukrainian children and adults with rare diseases!
May the New year 2022 bring health and happiness to you and your families!
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