{"id":6864,"date":"2019-11-21T10:51:37","date_gmt":"2019-11-21T00:51:37","guid":{"rendered":"https:\/\/lungfoundation.com.au\/?page_id=6864"},"modified":"2022-11-30T10:55:22","modified_gmt":"2022-11-30T00:55:22","slug":"overview","status":"publish","type":"page","link":"https:\/\/lungfoundation.com.au\/patients-carers\/living-with-a-lung-disease\/childhood-lung-disease\/overview\/","title":{"rendered":"Overview"},"content":{"rendered":"","protected":false},"excerpt":{"rendered":"","protected":false},"author":1,"featured_media":6725,"parent":1669,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-6864","page","type-page","status-publish","has-post-thumbnail","hentry"],"yoast_head":"\nOverview - Childhood Interstitial Lung Disease<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/lungfoundation.com.au\/patients-carers\/living-with-a-lung-disease\/childhood-lung-disease\/overview\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Overview - 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Information and research about this group of rare lung diseases can be scarce. There are also few doctors experienced in diagnosing and managing chILD. This information is provided to help you understand more about this group of rare lung diseases, the treatment options available and the key role that parents and carers have in looking after their children at home. ","link":""},{"acf_fc_layout":"wysiwyg_content_area","heading":"","content":"<h3>Childhood Interstitial Lung Disease (chILD)<\/h3>\n<p>The term chILD stands for <u>ch<\/u>ildhood <u>I<\/u>nterstitial <u>L<\/u>ung <u>D<\/u>isease. chILD is a broad term for a large group of rare lung diseases that can affect infants, children and adolescents. Most cases of chILD occur in infants, though chILD can also occur in children and teenagers. \u201cInterstitial\u201d refers to the tissue and space around the air sacs of the lung where oxygen is absorbed into the blood.<\/p>\n<p>chILD is not a single disease but a broad term for a group of diseases with similar symptoms. There are approximately 200 different diseases that sit under chILD, each of which has its own name<sup>1<\/sup>. In this group of diseases there is often a thickening of the framework of the lung, the interstitium, although other structures of the lungs (and in some cases other systems within the body) can be involved. Due to this thickening, it is harder for the oxygen to cross into the bloodstream and so less oxygen is available for the body. Children often have a fast breathing rate and may have difficulty putting on weight.<\/p>\n<h3>Types of chILD<\/h3>\n<p>There are many different types of chILD which can be grouped into distinct categories. Some types of chILD have a primary cause and typically appear in infancy. Other types of chILD are categorised as secondary as the changes in the lung tissue are due to another cause. There are many similarities amongst the different types of chILD and symptoms may be very similar. It is often difficult to make a specific diagnosis without more extensive testing.<\/p>\n<p> <\/p>\n","link":""},{"acf_fc_layout":"table","heading":"Different types of diseases included in chILD","Formatting Aid":"","table":{"use_header":false,"header":false,"caption":false,"body":[[{"c":"<strong>Occurring mainly in infancy <\/strong>\n\n"},{"c":"<strong>Affect all age groups<strong><\/strong><\/strong>"}],[{"c":"Developmental disorders (e.g. alveolar capillary dysplasia)"},{"c":"Disorders of systemic disease (e.g. rheumatological diseases)"}],[{"c":"Specific conditions of unknown cause (e.g. Neuroendocrine Cell Hyperplasia of Infancy (NEHI))"},{"c":"Disorders of the immunocompromised (e.g. STING\/SAVI)"}],[{"c":"Surfactant Dysfunction (e.g. alveolar proteinosis)"},{"c":"Disorders masquerading as chILD (e.g. Pulmonary Arterial Hypertension)"}],[{"c":""},{"c":"Unknown (i.e. pulmonary biopsy tissue that cannot be classified)"}]]}},{"acf_fc_layout":"wysiwyg_content_area","heading":"","content":"<h3>Different Terms<\/h3>\n<p>In addition to chILD, other terms for the condition may be used:<\/p>\n<ul>\n<li>Children\u2019s Interstitial Lung Disease<\/li>\n<li>Interstitial Lung Disease in children<\/li>\n<li>chILD syndrome<\/li>\n<li>Children\u2019s diffuse lung disease<\/li>\n<li>Diffuse Parenchymal Lung Disease (DPLD)<\/li>\n<\/ul>\n<p>These alternate terms can be confusing, but all refer to the same group of conditions or conditions where there are overlap with chILD, such as DPLD.<\/p>\n","link":{"title":"Contact us","url":"https:\/\/lungfoundation.com.au\/contact\/","target":""}},{"acf_fc_layout":"column_content","columns":[{"column_type":"text","heading_text":"How lungs work","paragraph_text":"<p>Understanding how the lungs work is helpful to understanding chILD. The lungs absorb oxygen from the air you breathe in and transfer it into the bloodstream, so it can get to every part of your body. Your body then uses the oxygen to help your cells work and produces the waste gas, carbon dioxide. Your lungs then expel the waste gas when you breathe out.<\/p>\n<p>The lungs are part of the respiratory system. The respiratory system is also made up of other organs and tissues that assist in the breathing process such as the airways, alveoli (air sacs), capillaries (tiny blood vessels), and the muscles that enable breathing.<\/p>\n<p>Watch the video for more information about the respiratory system and how the lungs work.<\/p>\n","button_display_setting":false,"button":{"":null,"button_type":"Link Button","link":null,"email":"","file":false,"modal_trigger":"","button_text":""},"background_colour":"#158c40","column_image":false,"youtube_video_url":""},{"column_type":"video","heading_text":"","paragraph_text":"","button_display_setting":false,"button":{"":null,"button_type":"Link Button","link":null,"email":"","file":false,"modal_trigger":"","button_text":""},"background_colour":"transparent","column_image":{"ID":931,"id":931,"title":"18793508_xxl","filename":"18793508_xxl.jpg","filesize":1373926,"url":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2018\/09\/18793508_xxl.jpg","link":"https:\/\/lungfoundation.com.au\/research\/our-research\/bronchiectasis\/18793508_xxl\/","alt":"","author":"3","description":"","caption":"","name":"18793508_xxl","status":"inherit","uploaded_to":872,"date":"2018-09-14 01:10:58","modified":"2018-09-14 01:10:58","menu_order":0,"mime_type":"image\/jpeg","type":"image","subtype":"jpeg","icon":"https:\/\/lungfoundation.com.au\/wp-includes\/images\/media\/default.png","width":800,"height":719,"sizes":{"thumbnail":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2018\/09\/18793508_xxl-150x150.jpg","thumbnail-width":150,"thumbnail-height":150,"medium":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2018\/09\/18793508_xxl-300x270.jpg","medium-width":300,"medium-height":270,"medium_large":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2018\/09\/18793508_xxl-768x690.jpg","medium_large-width":768,"medium_large-height":690,"large":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2018\/09\/18793508_xxl.jpg","large-width":800,"large-height":719,"1536x1536":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2018\/09\/18793508_xxl.jpg","1536x1536-width":800,"1536x1536-height":719,"2048x2048":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2018\/09\/18793508_xxl.jpg","2048x2048-width":800,"2048x2048-height":719,"xxlarge":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2018\/09\/18793508_xxl.jpg","xxlarge-width":800,"xxlarge-height":719,"xlarge":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2018\/09\/18793508_xxl.jpg","xlarge-width":800,"xlarge-height":719,"header-navigation":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2018\/09\/18793508_xxl-480x719.jpg","header-navigation-width":480,"header-navigation-height":719,"link-category":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2018\/09\/18793508_xxl-380x256.jpg","link-category-width":380,"link-category-height":256,"card":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2018\/09\/18793508_xxl-450x450.jpg","card-width":450,"card-height":450,"gform-image-choice-sm":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2018\/09\/18793508_xxl.jpg","gform-image-choice-sm-width":300,"gform-image-choice-sm-height":270,"gform-image-choice-md":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2018\/09\/18793508_xxl.jpg","gform-image-choice-md-width":400,"gform-image-choice-md-height":360,"gform-image-choice-lg":"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2018\/09\/18793508_xxl.jpg","gform-image-choice-lg-width":600,"gform-image-choice-lg-height":539}},"youtube_video_url":"https:\/\/www.youtube.com\/watch?v=3oYFCQvC-0Q"}]},{"acf_fc_layout":"wysiwyg_content_area","heading":"","content":"<h3>Interstitium<\/h3>\n<p>In between the surface of the alveoli and the capillaries is a very thin layer of connective tissue. This tissue is known as the interstitium. Oxygen and carbon dioxide must pass through the interstitium to enter and exit the capillaries surrounding the alveoli. The interstitium also provides a framework to maintain the shape of the lungs and is often described as the \u201cscaffolding\u201d of the lung. In healthy lungs this tissue is elastic and springy.<\/p>\n<p>Changes to the interstitium, like swelling, inflammation or scarring can reduce the ability of the lungs to absorb oxygen and\/or release carbon dioxide.<\/p>\n<h3>Interstitial Lung Disease (ILD)<\/h3>\n<p>Interstitial Lung Disease is characterised by inflammation and scarring (fibrosis) of the lungs. The interstitium becomes thicker, making it difficult for oxygen to cross over into the blood stream, which reduces the ability of the lungs to deliver oxygen to the body.<\/p>\n<p>This thickening of the interstitium also increases the distance between the wall of the alveoli and the capillaries, further impairing oxygen transfer between the airways and the blood. Additionally, the interstitial thickening results in the lungs becoming stiffer, making it harder to breathe. Children with chILD may inhale and exhale smaller volumes of air, and then must breathe faster and harder to make up for this.<\/p>\n<p>Interstitial Lung Disease can distort the shape of the lungs, making them smaller and stiffer, also resulting in increased breathlessness.<\/p>\n<p>Although Interstitial Lung Diseases often damage the interstitium, it is not the only part of the respiratory system that may be affected. \u00a0Other structures of the lung (such as the smaller airways, alveoli or blood vessels) are often also involved or, in some cases, other organs of the body.<\/p>\n","link":""},{"acf_fc_layout":"featured_posts_static","heading":"","view_more_link":null,"posts":[{"ID":1845,"post_author":"3","post_date":"2018-09-20 09:59:18","post_date_gmt":"2018-09-19 23:59:18","post_content":"<!-- wp:paragraph -->\n<p>This resource introduces Childhood Interstitial Lung Disease (chILD) and discusses the following topics:<\/p>\n<!-- \/wp:paragraph -->\n\n<!-- wp:list -->\n<ul><li>Disease subtypes<\/li><li>Symptoms<\/li><li>Causes<\/li><li>Diagnosis<\/li><li>Experience<\/li><li>Treatment<\/li><li>Management strategies<br>For further information on chILD you can visit our <a href=\"https:\/\/lungfoundation.com.au\/patients-carers\/living-with-a-lung-disease\/childhood-lung-disease\/overview\/\">website<\/a> or contact our Information and Support Centre on<a href=\"Tel:1800654301\"> 1800 654 301.<\/a><\/li><\/ul>\n<!-- \/wp:list -->\n\n<!-- wp:paragraph -->\n<p><\/p>\n<!-- \/wp:paragraph -->","post_title":"Childhood Interstitial Lung Disease","post_excerpt":"The Childhood Interstitial Lung Disease (chILD) fact sheet provides an overview of the disease, symptoms, causes, diagnosis, treatment, and management.","post_status":"publish","comment_status":"open","ping_status":"closed","post_password":"","post_name":"childrens-interstitial-lung-disease-child-fact-sheet","to_ping":"","pinged":"","post_modified":"2021-03-17 10:53:58","post_modified_gmt":"2021-03-17 00:53:58","post_content_filtered":"","post_parent":0,"guid":"https:\/\/lungfoundation.com.au\/?post_type=resource&p=1845","menu_order":0,"post_type":"resource","post_mime_type":"","comment_count":"0","filter":"raw"},{"ID":9639,"post_author":"85","post_date":"2020-07-28 10:37:15","post_date_gmt":"2020-07-28 00:37:15","post_content":"<!-- wp:heading {\"level\":4} -->\n<h4>As told by her mother, Susanna <\/h4>\n<!-- \/wp:heading -->\n\n<!-- wp:paragraph -->\n<p>Born at 34 weeks, Sarah was critically ill with respiratory failure and spent\u202fthree\u202flong months in intensive care\u202fbefore finally being discharged. Medical professionals had little idea what was wrong with the tiny baby.\u202fHer terrified parents, Susanna and Darren, who had two little ones at home, had no idea what the future would hold.   <\/p>\n<!-- \/wp:paragraph -->\n\n<!-- wp:paragraph -->\n<p>\u201cThe first three years of Sarah's life were a whirlwind of hospital admissions and medical reviews. We have lost count of the times she has been admitted to hospital for respiratory issues.\u202fAt\u202ffive\u202fmonths, following extensive testing, which included an invasive lung biopsy at\u202fthree\u202fweeks old, Sarah was diagnosed with pulmonary interstitial glycogenosis, a type of Childhood\u202fInterstitial\u202fLung\u202fDisease (chILD).\u201d <\/p>\n<!-- \/wp:paragraph -->\n\n<!-- wp:image {\"align\":\"center\",\"id\":9642,\"width\":415,\"height\":311,\"sizeSlug\":\"large\",\"className\":\"is-style-rounded\"} -->\n<div class=\"wp-block-image is-style-rounded\"><figure class=\"aligncenter size-large is-resized\"><img src=\"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2020\/07\/Sarah.jpg\" alt=\"\" class=\"wp-image-9642\" width=\"415\" height=\"311\" \/><\/figure><\/div>\n<!-- \/wp:image -->\n\n<!-- wp:paragraph -->\n<p>For eight years, Sarah relied on continuous oxygen and a night-time ventilator. The true impact of the rareness of Sarah\u2019s condition is far-reaching and often unseen by the outside world. <\/p>\n<!-- \/wp:paragraph -->\n\n<!-- wp:paragraph -->\n<p>\u201cThere is such a big gap in supportive services and financial help for both the child and the rest of the family. In Australia, we\u2019re quite fortunate that we have a good public healthcare system but the financial impact is never-ending. Sarah is fed both orally and via a gastrostomy, wears hearing aids for auditory neuropathy and struggles with joint hyper mobility syndrome, so a lot of support systems are in place to help her live her best life.\u201d <\/p>\n<!-- \/wp:paragraph -->\n\n<!-- wp:paragraph -->\n<p>For parents like Susanna and Darren, each day is filled with uncertainty and unique challenges. <\/p>\n<!-- \/wp:paragraph -->\n\n<!-- wp:paragraph -->\n<p>\u201cThere are long lasting effects we don\u2019t know yet. Sarah is vulnerable to viruses and bugs, and the isolation that comes with that affects the whole family. Our oldest child remembers Sarah being in ICU as a baby and both her siblings worry about bringing home germs. That anxiety has been a big struggle all her life. <\/p>\n<!-- \/wp:paragraph -->\n\n<!-- wp:image {\"align\":\"center\",\"id\":6846,\"width\":329,\"height\":326,\"sizeSlug\":\"large\",\"className\":\"is-style-rounded\"} -->\n<div class=\"wp-block-image is-style-rounded\"><figure class=\"aligncenter size-large is-resized\"><img src=\"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2019\/11\/SarahSusanna.png\" alt=\"\" class=\"wp-image-6846\" width=\"329\" height=\"326\" \/><\/figure><\/div>\n<!-- \/wp:image -->\n\n<!-- wp:paragraph -->\n<p>\u201cWhen Sarah was little and she was on oxygen, people would move away and not want their children to associate with her \u2026 but she didn\u2019t really understand. She knew that catching a cold could make her really unwell, but she didn\u2019t know what to do about it or how to protect herself.  <\/p>\n<!-- \/wp:paragraph -->\n\n<!-- wp:paragraph -->\n<p>\u201cAs she gets older (Sarah started high school this year), you start to see those things having a psychological impact. We\u2019ve managed to live in a little bubble with close family and friends which allows us to monitor and safeguard Sarah\u2019s health as best we can, but as she gets older her \u2018bubble\u2019 is growing. <\/p>\n<!-- \/wp:paragraph -->\n\n<!-- wp:paragraph -->\n<p>\u201cWe focus on Sarah's abilities,\u202fnot diagnosis,\u202fand encourage her to try anything she puts her mind to \u2013 she is resilient, tenacious and has a great sense of humour.\u202fAt times we worry what the future may hold for Sarah but for now we delight in listening to her singing in the shower and watching her scale\u202fa\u202fwall\u202fwith\u202fease\u202fat rock climbing.\u202fSarah is simply a blessing.\u201d <\/p>\n<!-- \/wp:paragraph -->\n\n<!-- wp:image {\"align\":\"center\",\"id\":9645,\"width\":330,\"height\":219,\"sizeSlug\":\"large\",\"className\":\"is-style-rounded\"} -->\n<div class=\"wp-block-image is-style-rounded\"><figure class=\"aligncenter size-large is-resized\"><img src=\"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2020\/07\/IMG_5577-2-1024x683.jpg\" alt=\"\" class=\"wp-image-9645\" width=\"330\" height=\"219\" \/><figcaption>Credit: Jade Flores Photography<\/figcaption><\/figure><\/div>\n<!-- \/wp:image -->\n\n<!-- wp:paragraph -->\n<p>While there are days when the emotional toll can feel insurmountable, Susanna lives by the old saying that it takes a village to raise a child. <\/p>\n<!-- \/wp:paragraph -->\n\n<!-- wp:paragraph -->\n<p>\u201cAs a parent, you take on the role of advocate and you learn to deal with it the best you can and find your tribe \u2013 Sarah has made me brave and assertive. When she was a baby there wasn\u2019t an online presence or any way to connect with other families so being able to do that now is so, so important. Sharing experiences with others who understand the unique challenges of having a child with a rare lung condition makes all the difference.\u201d <\/p>\n<!-- \/wp:paragraph -->\n\n<!-- wp:heading {\"textAlign\":\"left\",\"level\":4} -->\n<h4 class=\"has-text-align-left\">Caring for a child with a lung disease can feel isolating and overwhelming at times. But you are not<em> <\/em>alone\u202fas you navigate the challenges of day-to-day life and help your families to live well.\u202f\u202f\u00a0<\/h4>\n<!-- \/wp:heading -->\n\n<!-- wp:separator -->\n<hr class=\"wp-block-separator\" \/>\n<!-- \/wp:separator -->\n\n<!-- wp:paragraph {\"fontSize\":\"large\"} -->\n<p class=\"has-large-font-size\"><strong>Download Lung Foundation Australia's free resource pack to connect with information, support and care<\/strong><\/p>\n<!-- \/wp:paragraph -->\n\n<!-- wp:buttons {\"contentJustification\":\"center\"} -->\n<div class=\"wp-block-buttons is-content-justification-center\"><!-- wp:button {\"style\":{\"color\":{\"background\":\"#491b62\"}}} -->\n<div class=\"wp-block-button\"><a class=\"wp-block-button__link has-background\" href=\"https:\/\/lungfoundation.com.au\/patients-carers\/living-with-a-lung-disease\/childhood-lung-disease\/resources\/\" style=\"background-color:#491b62\" target=\"_blank\" rel=\"noreferrer noopener\">Download your free pack<\/a><\/div>\n<!-- \/wp:button --><\/div>\n<!-- \/wp:buttons -->\n\n<!-- wp:paragraph -->\n<p><\/p>\n<!-- \/wp:paragraph -->","post_title":"Sarah\u2019s story","post_excerpt":"","post_status":"publish","comment_status":"closed","ping_status":"closed","post_password":"","post_name":"sarahs-story-2","to_ping":"","pinged":"","post_modified":"2021-08-19 08:08:02","post_modified_gmt":"2021-08-18 22:08:02","post_content_filtered":"","post_parent":0,"guid":"https:\/\/lungfoundation.com.au\/?post_type=story&p=9639","menu_order":0,"post_type":"story","post_mime_type":"","comment_count":"0","filter":"raw"},{"ID":9647,"post_author":"85","post_date":"2020-07-28 10:50:16","post_date_gmt":"2020-07-28 00:50:16","post_content":"<!-- wp:heading {\"level\":4} -->\n<h4>As told by his mother, Natalie <\/h4>\n<!-- \/wp:heading -->\n\n<!-- wp:paragraph -->\n<p>As Natalie reflects on the terrifying and exhausting journey to diagnosis for her son, she recalls being able to hear her baby boy struggling to breathe from across the hospital ward. Josh was about 8 months old when he started getting sick. It coincided with him beginning day care, so initially Natalie didn\u2019t think much of it. When dozens of courses of antibiotics provided no relief, the mother-of-one knew something wasn\u2019t right. <\/p>\n<!-- \/wp:paragraph -->\n\n<!-- wp:paragraph -->\n<p>\u201cHe was admitted to the ICU and we spent a month in and out of hospital. At times he could hardly breathe, he was always coughing and vomiting and often had temperatures over 40. At one point his entire body was swelling up and he was so sick he could hardly move or breathe. <\/p>\n<!-- \/wp:paragraph -->\n\n<!-- wp:image {\"align\":\"center\",\"id\":9649,\"width\":269,\"height\":358,\"sizeSlug\":\"large\",\"className\":\"is-style-rounded\"} -->\n<div class=\"wp-block-image is-style-rounded\"><figure class=\"aligncenter size-large is-resized\"><img src=\"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2020\/07\/Josh-2-768x1024.jpg\" alt=\"\" class=\"wp-image-9649\" width=\"269\" height=\"358\" \/><\/figure><\/div>\n<!-- \/wp:image -->\n\n<!-- wp:paragraph -->\n<p>\u201cFinally, the doctors told me they suspected he had an immune deficiency and it was likely he had suffered lung and liver damage after all his body had been through. Over the next two weeks I spent most of my time trying to get my head around what all of this meant.\u201d <\/p>\n<!-- \/wp:paragraph -->\n\n<!-- wp:paragraph -->\n<p>Four months after he was first hospitalised, Natalie\u2019s precious boy was diagnosed with a rare lung disease, Bronchiolitis Obliterans.  <\/p>\n<!-- \/wp:paragraph -->\n\n<!-- wp:paragraph -->\n<p>\u201cIt was devastating. Needless to say, I spent a lot of time reading up on his new diagnosis, however I found it very difficult to obtain much information about the condition, especially in children.  <\/p>\n<!-- \/wp:paragraph -->\n\n<!-- wp:paragraph -->\n<p>\u201cOur healthcare team and the hospital staff have been amazing over the years, but they\u2019re all still learning so there is lots of trial and error, especially when it comes to the correct dosage and administration method of antibiotics during flare-ups. Josh doesn\u2019t qualify for additional support at school and as he\u2019s often fatigued during the day he struggles in class and has fallen behind. We\u2019re looking into accessing occupational therapy privately as the public waitlist is extensive and access psychological support through the private system to help him. <\/p>\n<!-- \/wp:paragraph -->\n\n<!-- wp:image {\"align\":\"center\",\"id\":9651,\"width\":251,\"height\":335,\"sizeSlug\":\"large\",\"className\":\"is-style-rounded\"} -->\n<div class=\"wp-block-image is-style-rounded\"><figure class=\"aligncenter size-large is-resized\"><img src=\"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2020\/07\/Josh-4-1-768x1024.jpg\" alt=\"\" class=\"wp-image-9651\" width=\"251\" height=\"335\" \/><\/figure><\/div>\n<!-- \/wp:image -->\n\n<!-- wp:paragraph -->\n<p>\u201cJosh\u2019s medication requirements and weekly infusions are a real challenge. He\u2019s still so young and hates to take his medication. Over the years he has developed a needle phobia and fear of medical procedures in general. We also have to really monitor his food consumption to make sure he\u2019s getting the nutrition he needs to support his body.\u201d  <\/p>\n<!-- \/wp:paragraph -->\n\n<!-- wp:paragraph -->\n<p>As the family settled into their new norm, the ever-gnawing question, \u201cwhat will Josh\u2019s future look like?\u201d, played on Natalie\u2019s mind so she turned to Facebook to try and connect with others in similar situations. <\/p>\n<!-- \/wp:paragraph -->\n\n<!-- wp:paragraph -->\n<p>\u201cThrough social media I connected with some incredible women who have been advocating for their children with rare lung disease and other Australian families impacted. It was there that I connected with Lung Foundation Australia and became involved with the Young Lungs program, which is helping families like ours find resources, help and support.\u201d <\/p>\n<!-- \/wp:paragraph -->\n\n<!-- wp:paragraph -->\n<p>Josh has a long journey ahead, but Natalie, who describes the now six-year-old as an incredibly resilient and happy boy, knows she\u2019s not alone. <\/p>\n<!-- \/wp:paragraph -->\n\n<!-- wp:image {\"align\":\"center\",\"id\":9653,\"width\":287,\"height\":382,\"sizeSlug\":\"large\",\"className\":\"is-style-rounded\"} -->\n<div class=\"wp-block-image is-style-rounded\"><figure class=\"aligncenter size-large is-resized\"><img src=\"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2020\/07\/20191110_053509504_iOS-1-768x1024.jpg\" alt=\"\" class=\"wp-image-9653\" width=\"287\" height=\"382\" \/><\/figure><\/div>\n<!-- \/wp:image -->\n\n<!-- wp:paragraph -->\n<p>\u201cJosh\u2019s diseases are invisible but they are constantly there; if you walked past him on the street you would have no idea about his silent struggle with rare disease. The constant medication, side effects, needles, breathlessness, wheezing, cough, fatigue, appointments, hospitalisations, and tests; but he doesn\u2019t let any of that hold him back.\u201d <\/p>\n<!-- \/wp:paragraph -->\n\n<!-- wp:paragraph -->\n<p>\u201cThere is a lot of fear there but being able to talk to other families who understand what you\u2019re going through is so good. I see other lung families in their struggle trying to navigate systems, systems that I am only just learning how to navigate. <\/p>\n<!-- \/wp:paragraph -->\n\n<!-- wp:paragraph -->\n<p>\u201cI joined the Young Lungs group hoping to be able to help other families find that information and support that is so vital, especially in the first stages of diagnosis. Lung Foundation Australia has made massive headway in this area and I am so happy to have been a part of it.\u201d <\/p>\n<!-- \/wp:paragraph -->\n\n<!-- wp:paragraph -->\n<p>\u201cIt is so important for people to understand that they are not alone and don\u2019t have to go through this journey by themselves. Reach out, connect, ask for support and know that it\u2019s okay to struggle, it\u2019s okay to cry and have meltdowns, it\u2019s okay to want a \u2018normal life\u2019 for your child. It\u2019s okay to get sick of the hospital visits and the medication battles and the utter terrifying thoughts that enter your mind on an almost daily basis. But also know that you are so strong, stronger than you ever knew you could be you are not alone and your child is a superhero, ask the questions, keep battling and connect.\u201d <\/p>\n<!-- \/wp:paragraph -->\n\n<!-- wp:image {\"align\":\"center\",\"id\":9659,\"width\":357,\"height\":286,\"sizeSlug\":\"large\",\"className\":\"is-style-rounded\"} -->\n<div class=\"wp-block-image is-style-rounded\"><figure class=\"aligncenter size-large is-resized\"><img src=\"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2020\/07\/Joshv2-1-1024x821.jpg\" alt=\"\" class=\"wp-image-9659\" width=\"357\" height=\"286\" \/><\/figure><\/div>\n<!-- \/wp:image -->\n\n<!-- wp:separator -->\n<hr class=\"wp-block-separator\" \/>\n<!-- \/wp:separator -->\n\n<!-- wp:heading {\"align\":\"center\",\"level\":4} -->\n<h4 class=\"has-text-align-center\">Australian children with rare lung disease deserve a brighter future. You can help Lung Foundation Australia provide life-changing resources and support services and create a brighter future for these children and their families. <\/h4>\n<!-- \/wp:heading -->\n\n<!-- wp:buttons {\"align\":\"center\"} -->\n<div class=\"wp-block-buttons aligncenter\"><!-- wp:button {\"customBackgroundColor\":\"#491b62\"} -->\n<div class=\"wp-block-button\"><a class=\"wp-block-button__link has-background\" href=\"https:\/\/lungfoundation.com.au\/donate\/\" style=\"background-color:#491b62\" target=\"_blank\" rel=\"noreferrer noopener\">Donate today<\/a><\/div>\n<!-- \/wp:button --><\/div>\n<!-- \/wp:buttons -->\n\n<!-- wp:social-links {\"align\":\"center\"} -->\n<ul class=\"wp-block-social-links aligncenter\"><!-- wp:social-link {\"url\":\"https:\\\/\\\/wordpress.org\",\"service\":\"wordpress\"} \/-->\n\n<!-- wp:social-link {\"url\":\"https:\\\/\\\/www.facebook.com\\\/lungfoundation\\\/\",\"service\":\"facebook\"} \/-->\n\n<!-- wp:social-link {\"url\":\"https:\\\/\\\/twitter.com\\\/Lungfoundation\",\"service\":\"twitter\"} \/-->\n\n<!-- wp:social-link {\"url\":\"https:\\\/\\\/www.instagram.com\\\/lungfoundation\\\/?hl=en\",\"service\":\"instagram\"} \/-->\n\n<!-- wp:social-link {\"url\":\"https:\\\/\\\/twitter.com\\\/Lungfoundation\",\"service\":\"linkedin\"} \/-->\n\n<!-- wp:social-link {\"url\":\"https:\\\/\\\/www.youtube.com\\\/user\\\/thelungfoundation\\\/videos?view_as=subscriber\",\"service\":\"youtube\"} \/--><\/ul>\n<!-- \/wp:social-links -->\n\n<!-- wp:paragraph -->\n<p> <\/p>\n<!-- \/wp:paragraph -->","post_title":"Josh\u2019s story","post_excerpt":"","post_status":"publish","comment_status":"closed","ping_status":"closed","post_password":"","post_name":"joshs-story-2","to_ping":"","pinged":"","post_modified":"2020-07-31 14:26:00","post_modified_gmt":"2020-07-31 04:26:00","post_content_filtered":"","post_parent":0,"guid":"https:\/\/lungfoundation.com.au\/?post_type=story&p=9647","menu_order":0,"post_type":"story","post_mime_type":"","comment_count":"0","filter":"raw"}]},{"acf_fc_layout":"wysiwyg_content_area","heading":"","content":"<h3>References<\/h3>\n<p><span class=\"text-reference\"><sup>1<\/sup>\u00a0chILD-EU, 2015, <em>Living with chILD: An Information Booklet for Parents and Relatives of affected Children, <\/em>Available at: <a href=\"http:\/\/www.klinikum.uni-muenchen.de\/Child-EU\/download\/en\/child-register\/services\/booklet\/Living-with-chILD-_UK-Version_-FINAL.pdf\">www.klinikum.uni-muenchen.de\/Child-EU\/download\/en\/child-register\/services\/booklet\/Living-with-chILD-_UK-Version_-FINAL.pdf<\/a><\/span><\/p>\n","link":{"title":"Contact us","url":"https:\/\/lungfoundation.com.au\/contact\/","target":""}}],"subtitle":"Childhood Interstitial Lung Disease","disable_header_overlay":false},"jetpack_sharing_enabled":true,"_links":{"self":[{"href":"https:\/\/lungfoundation.com.au\/wp-json\/wp\/v2\/pages\/6864","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/lungfoundation.com.au\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/lungfoundation.com.au\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/lungfoundation.com.au\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/lungfoundation.com.au\/wp-json\/wp\/v2\/comments?post=6864"}],"version-history":[{"count":10,"href":"https:\/\/lungfoundation.com.au\/wp-json\/wp\/v2\/pages\/6864\/revisions"}],"predecessor-version":[{"id":9700,"href":"https:\/\/lungfoundation.com.au\/wp-json\/wp\/v2\/pages\/6864\/revisions\/9700"}],"up":[{"embeddable":true,"href":"https:\/\/lungfoundation.com.au\/wp-json\/wp\/v2\/pages\/1669"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/lungfoundation.com.au\/wp-json\/wp\/v2\/media\/6725"}],"wp:attachment":[{"href":"https:\/\/lungfoundation.com.au\/wp-json\/wp\/v2\/media?parent=6864"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}