Eve was born with a collapsed lung. Within minutes, she was taken to special care and the next time her parents saw her, she was covered in tubes. <\/p>\n\n\n\n
![\"\"](\"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2020\/11\/Eve-in-pink-1024x683.jpg\")
<\/figure>Eve spent two months in the Royal Children\u2019s intensive care unit and was diagnosed with Childhood Interstitial Lung Disease and Pulmonary Hypertension \u2013 rare conditions that provided very limited understanding of treatment options. Genetic testing later revealed a TBX4 gene mutation with a specific sequence that is not reported anywhere else in the world. There is no one else to compare her to. <\/p>\n<\/div><\/div>\n\n\n\n
Her heart is five times larger than it should be. <\/strong> <\/p>\n\n\n\n Shaun and Georgie are proud parents who dream of finding answers. A treatment that will allow Eve to do all the normal things a happy little girl her age should be doing \u2026 without needing to be constantly attached to an oxygen cord. <\/p>\n\n\n\n \u201cI want her to be able to ride a bike without having to carry a tank,\u201d Georgie said. <\/p>\n\n\n\n \u201cI want her to go to kinder and go to school and experience all those really normal day-to-day activities like a normal child would. <\/p>\n\n\n\n \u201cShe\u2019s gone through so much trauma yet is so happy, joyful and bubbly. <\/p>\n\n\n\n \u201cAs parents, we get so much inspiration from her resilience and happy nature.\u201d<\/strong> <\/p>\n\n\n\n Childhood Interstitial Lung Diseases are a rare group that affect infants, children and adolescents. The absorption of oxygen into the blood is impaired, resulting in breathing difficulties and decreasing oxygen supply to other organs in the body. <\/p>\n\n\n\n From birth, Eve has been unable to breathe on her own. No doctors could tell her parents exactly what was causing this inability to breathe. It took a lot of waiting, a lot of tests to figure out Eve had a lung condition. <\/p>\n\n\n\n A 15m cord provides Eve with oxygen. Every moment, every day. <\/p>\n\n\n\n \u201cI hope for Eve to be happy as any parent does for their child. <\/p>\n\n\n\n \u201cShe\u2019s got this big wonder for the world and is just \u2026 cheeky. Very cheeky and very funny,\u201d says Shaun. <\/p>\n\n\n\n \u201cLung health doesn\u2019t seem to get the priority that other illnesses and diseases do.\u201d <\/p>\n\n\n\n Like the feelings many of us have had this year, Eve\u2019s future is uncertain. No one knows exactly what’s wrong but they do know she can\u2019t breathe on her own. <\/p>\n\n\n\n Her symptoms are less than one in a million. She is too small and fragile for more testing. <\/p>\n\n\n\n![\"\"](\"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2020\/11\/GSE-25-1-1024x683.jpg\")
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