Emily’s world shifted in an instant when she learnt, on her birthday, that her newborn daughter Emma had cystic fibrosis (CF).
“It was a true life-changing moment,” Emily recalls. “We can’t 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.”
As they adjusted to life with CF, Emily and her husband found strength in community. “There will be really tough times… but there is a huge support group out there with other CF families.”
Managing Emma’s diagnosis alongside daily life can be challenging. “It can be really hard to find time for everything,” Emily says. A portable nebuliser helps them stay on top of treatments, especially when Emma is sick and her treatments double. “I try to encourage her to do as many ‘normal’ things as possible and fit CF treatment around her life.”
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. “Emma spent a total of 36 days in hospital between October and January 2022/2023,” Emily says. “It was a huge reality check.” Thankfully, her health has since stabilised. “We went from at least one admission a year to going 2.5 years without one.”
Emma explains, “It feels normal because I’ve had it my whole life… I have to take lots of medicine and do my breathing treatments which I hate.” She stays active, does physio, and takes medication daily. “When I’m sick, I lay down and rest. My brother will be my butler.”
Despite CF, Emma remains resilient. “She struggles with all the treatments, but she is such a trooper,” Emily says. School and the RCH education team help her stay on track, and she keeps in touch with friends online. “Her life comes first and CF is just something else she needs to do like eating dinner or brushing her teeth.”
Emily and her husband are open with Emma about CF, without overwhelming her. “We treat it like it’s just a standard part of life.”
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.
Emily’s advice to new CF parents is simple but heartfelt: “Take it one day at a time… These kids are so resilient… Don’t let CF rule your life.” Throughout their journey, the family’s RCH CF team has been a vital support, “They are always there… flexible and understand that you have a life outside CF.”
Like many parents, she admits that self-care can be challenging. “My cup often feels empty, but my kids are my world.” For Emily and Emma, CF is part of life but will never be their whole story.
