![\"\"](\"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2020\/07\/Sarah.jpg\")
<\/figure><\/div>\n\n\n\nFor 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\n\n\n
\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\n\n\n
For parents like Susanna and Darren, each day is filled with uncertainty and unique challenges. <\/p>\n\n\n\n
\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\n\n\n
![\"\"](\"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2019\/11\/SarahSusanna.png\")
<\/figure><\/div>\n\n\n\n\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\n\n\n
\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\n\n\n
\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\n\n\n
![\"\"](\"https:\/\/lungfoundation.com.au\/wp-content\/uploads\/2020\/07\/IMG_5577-2-1024x683.jpg\")
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\n\n\n
\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\n\n\n