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Advice for Parents of a CF child

Becoming a parent is one of the most emotional and overwhelming experiences for people, and a new cystic fibrosis diagnosis can be all-consuming. Cystic Fibrosis Canada has resources to help guide parents through this news, but in addition to official and medical advice, the perspective of people with CF can lend itself very useful during this time. We asked our community what advice they would give to the parents of a child newly diagnosed with CF:

“With the amazing advances and extended life of many people living with cystic fibrosis my advice is to let your child dream of a bright future. Let them pursue activity, education and relationships. When I was born in 1978, I was told I may not live past elementary school. Today I am 40 years old, I am married and have a beautiful step-daughter I have raised since she was two. There are three pillars to living longer with CF: do your meds/therapies, eat healthy and exercise. I would add a fourth pillar of mental health. Be open and honest as a family. Finally, celebrate life!” – Rob Burtch

“My first piece of advice would be to not believe everything you read on the internet. Talk to your child’s CF team…every child with CF has a different story, what works and doesn’t work for them, and what their major problems are moving forward. Take it day by day, and always remember that there is a huge CF community in Canada and that extra support can sometimes be the little boost frightened parents need.” – Meaghan MacRury

“After the initial shock, I would advise the parents to seek out reliable resources.  Do not believe everything you read on the internet! Speak with your physician, CF clinic team, other parents who have children with CF, CF adults, and contact your local Cystic Fibrosis Canada chapter. There is a wealth of information and support available.  Choose wisely and trust what feels like a good fit for you and your family.” – Brenda Chambers-Ivey

“If there was ever a good time to be diagnosed with CF, now is the time. With so many exciting new medications being developed right now, the life of a person with CF looks very different from when I was first diagnosed 36 years ago. One of the biggest reasons for that is because of all the hard work CF Canada has done over the past 55+ years. It’s important to take time and learn everything you need to know about CF so you can help your child be as healthy as possible for as long as possible.  It’s also helpful to get involved with your local CF Canada chapter where you’ll find a huge amount of support along with the fulfilling and satisfying feeling that you’re really making a difference. I also think it’s incredibly important to allow your kid to be a typical kid. Send them to school; don’t get too caught up in where or when they might get exposed to Pseudomonas or the next super bug. Help them develop a desire to stay healthy so doing their physio and taking meds doesn’t become too much of a burden on them. I never became resentful towards my CF or having to spend time doing physio because it was never made out to be a big deal. My parents kept things very pragmatic and matter of fact which I think helped me in the long run. It somehow took the power away from my disease and prevented me from getting overly anxious about it.” – Kim Wood

“Don’t believe everything you read will be the same for your child. Fill your child with faith, hope, confidence, knowledge and a drive to live. Follow your doctor’s recommendations, but also follow your own heart. And for God sakes let them feel normal and let them be a kid. Don’t always treat them like ‘the sick kid’.” – Tim Vallillee

“Although it can be tempting to try to shield your child from all bacteria and things that could possibly cause infection, try to keep in mind that mental health is important at all ages with CF, and part of staying mentally healthy is participating in social activities as normally as possible. Try to help your child develop a sense of resilience and determination with regards to CF, rather than a sense of fear and anger. I recommend focusing as much as possible on the things that are within your power now to stay healthy, rather than relying on a future “cure” that may not come. This will help your child to recognize CF as a part of who they are, rather than some enemy that they will have to constantly fight throughout their life.” – Terra Stephenson

 

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