Inosandreia Nesi Tike
ON THIS PAGE WE'LL SHARE THE PERSONAL STORIES OF CHILDREN AND FAMILIES IN OUR BX COMMUNITY
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.
Inosandreia Nesi Tike
In February 2013 we met Esther-Jordan Muriwai. She had Bronchiectasis too. Sometimes we were both sick and in hospital at the same time so we visited each other. Esther told me that if I don’t do my physio I would end up very sick like she was. She encouraged me to do my daily physio and medications. Esther showed me that I can do anything I want to do in my life…I don’t need to let my lung disease stop me from doing things, especially when I am well. Having Bronchiectasis doesn’t mean you have to be left out of things.
Sadly, Esther passed away in June 2014. Esther had set up a support group on Facebook called Northland Bronchiectasis Support Group which is now managed by my Mum, Lisa Reed. At the time Esther had already started to set up the Bronchiectasis Foundation to help raise funds to help people (especially children) with Bronchiectasis. We shared ideas about how we can help people, such as providing an information pack to children with Bronchiectasis, and their families, who are admitted to the children’s ward at the hospital. The pack could have information about Bronchiectasis in it for the parents and activities for the sick children to do. Esther and I have been in the newspaper and on TV quite a lot to raise awareness of Bronchiectasis, the Support Group and the Foundation. I was also the face of the Countdown Kids Appeal two years ago, to raise funds for the children’s ward at the hospital. I helped to raise $137,000.