Cystic Fibrosis a genetic condition that affects For as many as 5,000 Canadians at the time of writing in many ways. For Paula van Wyk she grew up with an older brother who has CF and now she helps look after the next generation of CF warriors in her young son Jack. in today's episode we talk about the importance of doing research on family genetics, food and enzyme monitoring, the salty skin test, planning for the future and so much more.
To raise awareness for Cystic Fibrosis you can help by donating to the Cystic Fibrosis Canada walk that takes place May 28th and following Jack's journey in the link below
Until next time Keep Calm and Roll on.
Early June, in the car driving home from Jack’s first doctors appointment after leaving the hospital I got a phone call. The doctor said the newborn screen results came back. Before he could say anything else I questioned “cystic fibrosis?”
Definitely not the news we were expecting. Our first baby was born at the start of the pandemic and spent two weeks in the nicu, when Jack came home without issue we just assumed everything was perfect. It’s still perfect, just a different kind of perfect.
Cystic fibrosis wasn’t new to me - I have an older sibling with the disease. I witnessed what he went through in his younger days, as well as the work my parents did to help thrive, but also the advocacy and volunteer work to help make this disease a thing of the past (not to mention my older sister was born with Down Syndrome… they did a lot this type of work).
I was not one really for social media. But with Jack we felt there was an opportunity to maybe start advocating for him and increasing awareness. Although my IG circle is still quite small, definitely not an influencer and not trying to be, the support network that I have gained from other parents, mainly mothers, who have a child with CF has been …. I actually don’t know what word or words to use yet - but all positive!
I work in research and education - in fact my focus is on enabling movement for vulnerable populations - so sharing Jacks journey just seemed like an alignment with that too.
This is still a journey I’m figuring out how to navigate - it’s such a different world than when my brother was younger…. So many new advancements and just a greater knowledge and understanding. It’s a heart full of love and worry like I have for my other child too - but one that is supplemented with hope…. That CF is not necessarily a life sentence but rather an opportunity to walk a different path.