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OUR STORIES

ON THIS PAGE WE'LL SHARE THE PERSONAL STORIES OF CHILDREN AND FAMILIES IN OUR BX COMMUNITY

My Story - Inosandreia Nesi Tike

10/5/2018

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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
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NZ Herald: "Bronchiectasis: It's completely terrifying"

30/8/2017

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http://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=11913397
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Chloe's Story

22/9/2016

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​My name is Chloe I am from Tauranga and I am 4 years old. I live with bronchiectasis and asthma.
 
 Chloe was diagnosed with Bronchiectasis at 3yrs old in August 2016. She suffered from repeated chest and breathing issues since about 5months old when she was first admitted to Tauranga Hospital with Bronchioloitis. Chloe continued to have many hospital admissions with bronchiolitis, rsv and viral wheeze. She started reliever inhalers at 9months old and was placed on a preventer inhaler at 13months old which she all still takes. At the age of two she was diagnosed with asthma. In July 2015 Chloe contracted a severe case of Influenza A, which left her hospitalised with breathing problems. Chloe took 2 months to fully recover from this illness.

In August 2016 Chloe was referred to Starship hospital where she was diagnosed with Bronchiectasis in both her lungs, and low antibodies to the Pneumococcal vaccine for which she has booster injections for. She does daily physio consisting of chest percussion for 20minutes once a day and bubble PEP once a day, chest percussion in increased to twice a day when she is sick or on antibiotics, when she also has Saline through the nebuliser to help break up and loosen secretions.  If Chloe is sick or has a bad cough she goes on a 3-4 week course of oral antibiotics and if they don’t work then she starts IV antibiotics.
Chloe often gets tired and fatigued towards the end of the day more so than a normal child. She still has a daytime nap every day.
​
Despite living with asthma and bronchiectasis Chloe is a fun loving wee girl who takes everything in her stride, She is a great swimmer and is very confident in the water, she loves attending preschool when she is well enough and Loves Peppa pig! 
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Taylor's Journey

6/9/2016

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"My name is Taylor Junior Herewini, I am 2 years old and I live with Bronchiectasis."

Taylor was born in Waihi, Waikato on the 07 of June 2014 weighing a massive 10lb 10. He always had something not quite right with his breathing, his first chest infection was at 3 weeks old and he was admitted into Tauranga hospital requiring ICU and breathing support. At 3 months old Taylor was intubated and airlifted to Starship Hospital where he spent 9 days ventilated. Since then Taylor has required 68 hospital admissions and 11 ICU admissions due to his breathing, he was diagnosed BX at 8 months old and is now on twice a day inhalers and physio (percussion). Taylor is also fed all liquids through a tube in his nose due to aspiration (when the liquids go into the lung instead of stomach) because his swallow is unsafe. Taylor is such a character he is the youngest of 3 boys, his two big brothers adore him. Taylor goes to home based Childcare 3 days a week for a few hours with very small numbers so he can learn to socialise with other children but also stays away from the germs that spread around at bigger centers, sometimes he has to wear masks across his face to protect him from bugs but he is used to this and it doesn't bother him anymore. He loves the outside and we are also encouraged to keep him active to help his condition, he loves trucks, cars, cartoons animals and playing with other kids. It's extremely hard to manage hospital admissions, Doctors appointments, medications, inhalers, physio along with working and spending time with the other children but we do it because without these things Taylor's condition will deteriorate. Things are getting better for Taylor and we are enjoying seeing him grow and thrive into a active young boy.
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Katie's Story

14/7/2016

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​My name is Katie Reed. I am 12 years old and I have the lung disease Bronchiectasis.
 
I was diagnosed with Bronchiectasis four years ago, in May 2012, following seven bouts of pneumonia in the previous fifteen months. I also have Asthma.
 
Because I have Bronchiectasis I get sick a lot and miss a lot of school, I now only go to school part-time as I get very tired. I spend lots of time in hospital having IV antibiotics for lung infections. I have been in hospital thirty times in the last four years, each time I stay for at least two weeks (one time I stayed for four weeks). When I am in hospital I do lots of school work with my Mum and my teacher from the Northern Health School. I also go to Starship Hospital to stay.
 
When I am not in hospital I have lots of appointments at Whangarei Hospital and Starship Hospital. In December 2013 I went to Starship Hospital and got a port-a-cath put in. Having a port-a-cath has made my life a lot easier, especially when I am in hospital, because I don’t have to be poked and prodded with needles in my veins or wait hours without food to go into theatre to get a PICC line put in.
 
To help me stay well I take medication and inhalers, and do twice-daily physio and nebuliser. Sometimes I don’t want to do my physio but I know I have to otherwise I get sicker and go into hospital more often. And this means I miss out on fun things in life like horse riding, swimming lessons, hanging out with my friends, going to school, and going to Girl Guides.
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.
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Welcome to our stories

12/7/2016

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As the Foundation continues to grow and help people we will share our children's stories on this page. To get the ball rolling below you'll find a gallery of Katie, one of the many children we are hoping to help that suffers from BX.
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    The Kids

    Here you'll find stories about the families and children in our BX community.

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