Meet 13-yr-old Benat Potokci, a brave young man who suffers from Cystic Fibrosis – but who doesn’t let his condition rule his life.
Benat’s mother Caroline told The Liberal that the Sandyford boy is very brave with his condition and faces it down rather than the other way around.
Benat told The Liberal that he goes to an amazing school, Stepaside Educate Together Secondary School. He has one brother, Sam who is 8 years old and is very interested in promoting awareness of Cystic Fibrosis.
He has a great interest in Computers and loves playing tennis, his favourite player being Andy Murray.
You can read Benat’s daily routine by clicking this link – we’ve included it in this article below:
“When I wake up every morning, I go downstairs and start by having my nebuliser. You might be wondering what exactly a nebuliser is. A nebuliser is a drug delivery device used to administer medication in the form of a mist which is inhaled into my lungs. Before I start my nebuliser I take two puffs of a Ventolin inhaler which helps to open up my lungs through a Volumatic. A Volumatic is a large volume space device which helps me to get the most from my inhaler.
When I finish my Ventolin inhaler I start with my Hypertonic Saline, which I take through my nebuliser. The salt attracts water into the airways, which helps to thin the mucus, which makes it easier to cough out.
Once I finish my Hypertonic Saline I do my Pep (Physiotherapy) followed by six huffs. I do five sets of ten. I put my mouthpiece pep in my mouth then I take a big breath hold it for about 2-3 seconds than I breathe out against a hard resistance for about 5-6 seconds. This helps air to get behind the mucus and helps it to move it from the lungs and airway walls. Once I finish every set I do six huffs with a piece of tissue which helps to move the mucus from my lungs.
I then take another nebuliser which is called Colobreathe. I have Pseudomonas (which is a persistent lung infection) The Colobreathe prevents my Pseudomonas from getting any worse.
Once I am finished all of that (which takes about thirty minutes of just sitting there) I then have to check my blood sugars and inject myself with insulin.
I have Cystic Fibrosis Related Diabetes, CFRD for short. Once I’m finished my nebulisers I then have to go and check my blood sugars. Once I finish checking my blood sugars I then go and inject myself with insulin. I must inject myself with Insulin twice a day before break and before my evening meal. I then have to check my blood sugars four times a day.
Thankfully, I recently I got a new device called The Freestyle Libre System. Instead of having to prick my finger I put a sensor onto the back of my upper arm which stays for two weeks. This is amazing technology, as the only thing I have to do is hold the hand-held monitor against the sensor and it will give me my most current blood sugar reading. This is all pain free which makes it easier for me.
One I’m finished everything I then have my breakfast and take my medication which consists of vitamins, antibiotics and the new and amazing drug, Orkambi. Once I’m finished everything I then get ready to go to school.
When I come home from school I check my blood sugar and inject myself with insulin. Once I’ve completed them I must wait 15 minutes and I then can eat my dinner.s I have another nebuliser called Pulmozyme. Pulmozyme helps to break down the mucus and makes it easier for me to cough up.
Once I finish my nebuliser I then start my homework. After I do my homework I eat some more food followed by antoher blood sugar test and then I have my night time nebulisers, which are the exactly the same nebulisers I took in the morning.
I then finish my night by taking my medication and go to bed.
Benat”
Well done, Benat! Congratulate him on his candidness on our Facebook post’s comments section.