{"id":10672,"date":"2025-11-07T13:30:48","date_gmt":"2025-11-07T02:30:48","guid":{"rendered":"https:\/\/blogs.rch.org.au\/news\/?p=10672"},"modified":"2025-12-29T10:50:37","modified_gmt":"2025-12-28T23:50:37","slug":"emmas-story","status":"publish","type":"post","link":"https:\/\/blogs.rch.org.au\/news\/emmas-story\/","title":{"rendered":"Emma’s story"},"content":{"rendered":"

Emily\u2019s world shifted in an instant when she learnt, on her birthday, that her newborn daughter Emma had cystic fibrosis (CF).<\/strong><\/p>\n

\u201cIt was a true life-changing moment,\u201d Emily recalls. \u201cWe can\u2019t do anything to get rid of her CF, so we just need to be there for her and give her the best outcome we can.\u201d<\/p>\n

As they adjusted to life with CF, Emily and her husband found strength in community. \u201cThere will be really tough times\u2026but there is a huge support group out there with other CF families.\u201d<\/p>\n

Managing Emma\u2019s diagnosis alongside daily life can be challenging. \u201cIt can be really hard to find time for everything,\u201d Emily says. A portable nebuliser helps them stay on top of treatments, especially when Emma is sick and her treatments double. \u201cI try to encourage her to do as many \u2018normal\u2019 things as possible and fit CF treatment around her life.\u201d<\/p>\n

Emma spent her first 77 days in hospital due to Meconium Ileus. The family, living 2.5 hours away, stayed at the Ronald McDonald House. Years later, Emma faced another long hospital stay over summer due to a serious lung complication. \u201cEmma spent a total of 36 days in hospital between October and January 2022\/2023,\u201d Emily says. \u201cIt was a huge reality check.\u201d Thankfully, her health has since stabilised. \u201cWe went from at least one admission a year to going 2.5 years without one.\u201d<\/p>\n

Emma explains, \u201cIt feels normal because I\u2019ve had it my whole life\u2026 I have to take lots of medicine and do my breathing treatments which I hate.\u201d She stays active, does physio, and takes medication daily. \u201cWhen I\u2019m sick, I lay down and rest. My brother will be my butler.\u201d<\/p>\n

Despite CF, Emma remains resilient. \u201cShe struggles with all the treatments, but she is such a trooper,\u201d Emily says. School and the RCH education team help her stay on track, and she keeps in touch with friends online. \u201cHer life comes first and CF is just something else she needs to do like eating dinner or brushing her teeth.\u201d<\/p>\n

Emily and her husband are open with Emma about CF, without overwhelming her. \u201cWe treat it like it\u2019s just a standard part of life.\u201d<\/p>\n

Emma loves animals, Barbie movies, and dreams of becoming a vet. She also recently performed in her first calisthenics routine – an exciting milestone that shows CF never holds her back.<\/p>\n

Emily\u2019s advice to new CF parents is simple but heartfelt: \u201cTake it one day at a time\u2026 These kids are so resilient\u2026 Don\u2019t let CF rule your life.\u201d Throughout their journey, the family\u2019s RCH CF team has been a vital support, \u201cThey are always there\u2026 flexible and understand that you have a life outside CF.\u201d<\/p>\n

Like many parents, she admits that self-care can be challenging. \u201cMy cup often feels empty, but my kids are my world.\u201d For Emily and Emma, CF is part of life but will never be their whole story.<\/p>\n

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