Hi my name is Inosandreia Nesi Tike. I am 9 years old. I will be 10 years old in June this year. I was born premature at 24 weeks and 6 days weighing only 745 grams my parents were told I was heavy for my gestation. I stayed in NICU for four months. One week after being discharged home from NICU my dad had to perform CPR on me because I stopped breathing. The first year of my life was mostly spent in the hospital. The longest stay was around 3 weeks. The week of my first birthday my parents were told that I had two chronic illnesses. The first was Chronic Asthma that they were familiar with and the second was Bronchiectasis. It was the hardest word my dad had heard he said. They were taught to pronounce it Bron-Key-Ec-Ta-Sis. I went home on oxygen after my first birthday and stayed on this for about 2-3 years. It was very hard for my mum she remembers people judging her and talking about her whenever we were out shopping. The hardest thing about having bronchiectasis is people don’t really understand what it means. They sometimes say ‘oh its only bronchiolitis’. My mum has taught me with the doctors what it actually means. My bronchiectasis is worse during the Winter season but for some reason it has been playing up during summer too. I have had too many days off school so my parents decided that I will be home-schooled this year. I want to be someone who educates people on what it means to have Bronchiectasis. I have gotten much better over the years but I still have to be very careful as I have lots of triggers for my asthma and bronchiectasis. Bronchiectasis does not rule my life but it plays a big role in it. One thing that I hope people understand is that my phlegm gets stuck so much in my lungs that when I am out in public if my mum tells me to spit it out I am not being rude I am just trying to stay healthy and well. I sometimes walk around doing my physio exersizes. Moving my phlegm about through my physio and coughing is not a disgusting thing it is actually something that will keep me alive. Bronchiectasis is always mispronounced I hope when people read my story they can learn how to stay my illness and learn a bit about how we live day to day. I may look very strong and healthy but my lungs are very sick with more awareness I know people will be more understanding and have more knowledge on this lung disease. Remember when I cough very loud and make funny noises its only me trying to bring the phlegm up so that my lungs are cleared.
Thank you
Inosandreia Nesi Tike
Thank you
Inosandreia Nesi Tike
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