Have you ever wondered what life with cystic fibrosis is like? Life with CF is painful, demanding a strict regimen of medication, inhalation therapy and training, hospitals, IVs, and injections. Daily medication, breathing exercises, and inhalers increase the intervals between hospitalizations. But sometimes it is impossible to combine full-time schooling, training, and timely therapy. Taking medication is the easy part: pack the necessary medications for a whole day and take them with you in a pill box. But how can you take the bulky inhaler with you or power it? What if you need to go for an examination somewhere far away — or even in a different country? For example, travel takes about 20–24 hours to get from Zaporizhzhia to Lviv. There is no alternative but to accept the risks and hope to get there without adversity.
As technology advances in the age of wireless, manufacturers of medical devices develop and improve their products. In May 2018, thanks to the support of our loyal friends, our foundation was able to purchase ten Omron portable nebulizers and send them to our wards. We received a lot of reviews and impressions:
"Wonderful portable inhaler." "It is a luxury. It is a luxury of freedom, movement, adventures, beaches, mountains, clear starry skies, and singing around a campfire. That's what you gave us in that little box! You gave us the opportunity to open new horizons and fill our lives with even more colors.”
We wish that everyone with CF had a little box so that everyone could do what they enjoy without having to choose between health and happiness. They could spend all day in the park or exploring the woods. They would be able to study at school or university without worry. They could go on a date, no longer afraid to linger for an hour or two, hugging their significant other. They could go out with friends anytime they want, not just when there is a gap between treatments. They would be able to take a walk with their baby, enjoying interaction, without watching the clock to signal the need to run home to nebulize the little one… "I hope that there are enough benefactors out there to give such a wonderful gift to every patient with CF." — Alisa Onufrieva's mom Natalia said. We share this hope and appeal to you.
We have a list of children and adults who need portable inhalers. Would you lessen their difficult struggle with a gift of freedom?
