RESPILON® Story of a child with CF through her father’s eyes

Sophie Eleonora Jansa and the Respilon face mask 

Sophie was born almost 3 years ago, everything was amazing, first journey home by car from the hospital, first bath time, smiles, everything was beautiful. Until the day the doctor called – something went wrong, and we had to come to the Motol Hospital to undergo some testing, and we learned that it was very important! It was maybe right the next day we were expected to come for a sweat test.

We had no idea of what was really going on until the doctor stopped me in the hallway in the hospital while my wife was already in the room. The doctor said: “It is not good. Your daughter has cystic fibrosis.” Then we entered the room and the test result was positive. In that moment you feel loads of stuff flying through your head and your feel like you’ve failed, like someone has just shot you to pieces with a burst of machine-gun fire. After a while you end up asking yourself “why Sophie, why her”, what and where it went wrong, the Boss up there doesn’t exist, why this little baby girl, why, why…?! You don’t listen what the doctor’s telling you and everything just spins in your head. When the doctor tapped on my shoulder and I saw my wife in tears I was devastated, but I had to listen to what would happen next. The doctor explained everything, including other things like treatment and more importantly, she told us about an educational stay.

Then we went home, and our heads were spinning from what will happen next.

At home, according to the doctor’s instructions, we prepared and adjusted everything for our daughter to have the best conditions.

Then we had to see the vet because of our badger Conie, followed by smear tests and testing in a laboratory to see if she has some bacteria or viruses.

We got rid of all flowers that weren’t necessary, we cleaned and completely disinfected our whole home!  

The educational stay at the Motol University Hospital was coming up.

We packed everything we needed and hit the road with expectations of what else we would learn in Motol.

After we put up and quickly looked around the doctor came to see us, and she started to explain how and what will be happening. She brought a pile of forms, questionnaires and a complete time plan.

In the afternoon we were paid a visit by the Cystic Fibrosis Association during which we received a small face mask (more pieces) for Sophie from the RESPILON company to protect her from a potential inhalation of some viruses that could put her at risk or worsen her health condition.

It wasn’t easy to teach a little baby to keep something on her face. But my wife was tireless, and Sophie was wearing the face mask and she still wears it every time we go to a medical facility, but also in places that are crowded. We have actually used during our visit in the zoo.

Sophie is older now and she reminds us she needs her face mask when we forget. She has her own child handbag where she has one face mask from the Respilon company.

If you think that it was easy to teach a little child to use something that is not comfortable, then your wrong, it was challenging. My wife came up with an idea – we would put the face mask on a doll’s face that my daughter had always on her wherever she went, so, even the doll had a face mask and when our daughter didn’t want to wear it we kept telling her that even her doll was protected and she wasn’t crying. With this, we’ve dealt with the problem after some time and we know that Sophie is protected thanks to this face mask.

When I or my wife was sick, we had Respilon face masks and we protected Sophie at home as well. She has never caught anything from us and was even ill after some of her visit at medical facilities.

There is no use? I don’t think so!! Thanks to the Respilon face masks we can provide protection to our daughter.

There face masks have become inseparable from our lives. I cannot imagine now that we wouldn’t have these face masks!!!

Regarding the present situation, I and my co-workers have managed to buy R-shield neck gaiter for our office and our families online. Thanks to Respilon we protect ourselves, our co-workers and our close ones!!!

Thank you for your face masks and neck gaiters.

 

With kind regards,

Ing. Luděk Jansa DBA, LL.M.

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