What a parent of a child with Cystic Fibrosis wants you to know

We spoke to Grace's mum, Marie, to tell us about the day-to-day challenges with her little lady What exactly is CF? A hereditary disease affecting the endocrine glands. It leads to production of an abnormally thick mucus leading to blockage of the pancreatic ducts, intestines and bronchi resulting in respiratory infection. "Each morning comes we have a list of responsibilities. A half hour of physiotherapy is done in the morning and evening that includes running, jumping, trampoline work and then a series of work on the nebuliser for Grace's lungs." Both Marie and her husband equally share these tasks. The everyday  "There is really nothing different about Grace compared to any other little child on the surface. Grace's favourite food is brown bread, cheese and tuna, and she loves Frozen. Then, there is the medication. Before breakfast, enzymes need to be administered  to Grace or cramps can develop leading to constipation, and she can get digestive discomfort. If Grace is in school, her teacher is up-to-date with her care so she'll administer the medication." Does Grace let it hinder her? "No, not at all! She often asks 'what time are we doing Physio?'. She's a normal little girl and never out of her Cinderella dresses. Our friends, family and even strangers, say how adorable she is. She was definitely here in another life because her memory is impeccable, and she is a little character. We always say she leaves a little sparkle everywhere she goes." Does Grace have siblings? "Her sister Sarah is 7 and quickly understands. It came as second nature. She takes her sister's CF as the norm and explains it to her friends and everything. She tells me if Grace eats a biscuit "Grace needs to get her enzymes, Mom!." When Grace was first diagnosed, she would do physio on her dolls. The bond between the girls is very strong." How is CF diagnosed? "It's a genetic disease. My husband and I were carriers of the CF gene. People need to contact their doctors and get the "Carrier test" done to determine whether a child born to them will be affected by it. One (member) of my family discovered the gene whereas, (another) didn't have it." Does a particular diet help? "The main thing for Grace is high-fat content foods to keep her weight up. She'll have butter on her potatoes, cheeses and regular full meals. Grace exerts herself through excessive breathing and uses much more energy that way. She just needs more food more food." Does physiotherapy play a large part? "Postural drainage and physiotherapy are key in Grace's daily routine to keep abreast of the issues that affect her. Both of us are trained in Physiotherapy for the morning and in the afternoon. Mucus has to be removed from her lungs as bacteria stick to the mucus. It is a huge problem then for Grace". What's the most helpful form of therapy? "Simple stuff. She loves film and TV. She loves to laugh and play and is a very happy little girl." What would make your life easier? "Isolation rooms in hospitals are a big thing. Only a few hospitals close to us have that facility. We want to stay out of hospitals and manage Grace health ourselves. Nurses come to our house to help with Grace, and they are a Godsend. More fundraising for the cause of CF can always help." What about awareness of CF? "I fundraised €6,000 for Temple Street in the past and have begun a private support and coping forum on Facebook for other parents of children with CF. It's private but, it is such a help. I opened the Dublin West Branch of CF Ireland."   If you would like more information, check out Cystic Fibrosis Ireland. Donate to the society here We wish to thank the family for their wonderful insight into the daily life of such a remarkable little girl. Little Grace Duffy clearly has a loving family who cherishes her every moment. We commend Marie and her husband on their exemplary parenting. If you were affected in any way by the content in this article, please do not hesitate and drop us an email at editorial@herfamily.ie