I apologize if this is not the correct forum for this post but I am looking for some advice. My cousin has just had a little girl, Sianna, in April who was recently diagnosed with Cystic Fibrosis. I have started reading up on it as I am not very informed about the disorder but would like to respond to their email and offer some support. The problem is that I am unsure how to put that into words or of how we can assist them. I am encourage by the reading I have done but I still know that this could be a very difficult journey for Sianna and her family. If anybody knows more about this and has some advice as to things we could do for them that would be helpful, I would very much appreciate that. I just really want them to know that we are here for them. They are trying to be positive but have expressed how hard it is for them to come to terms with the fact that their daughter might be faced with a shortened life and how they are struggling to see past the worst case scenarios at this stage.
I really hope I have not offended anyone with this post.
I don't have any advice, but as a mum who was called and told her son had CF (was a false alarm, he is a carrier) I was devistated. For days I cried and was mourning the life he wouldn't have. Just offer to be there if they need anything, babysitting, meals, cleaning, a shoulder.
It is a tough journey, but with the improved medical findings they can live a fairly normal life. It means a lot of physio, daily medication and constant hospital stays with chest infections but the life expectancy is around 30 years atm (and when I was a kid 10 years ago it was only in your teens!!) so it's looking better all the time.
Who knows, by the time shes in her teens they might have a cure!
My cousin is 30 and has CF, we lived in the same house for 2 years growing up.
I can answer some questions, it can be very hard for a while, but by combining medicine and natural therapies my cousin is living a fantastic life. She is awaiting a transplant at the moment, but she's still going out and having fun.
There are really good CF associations in every state of Australia. The websites have info on what CF is and they can send out info packages. If your cousin is going through a major hospital, they will prob be linked in to the association in their State but they are a good source of info if you would like to find out more.
There is quite a variation in severity of CF, and early diagnosis, healthy lifestyle and treatment are increasing the lifespan of kids with CF born today.
Just as an aside, CF is a genetic condition and 1 in 25 australians are carriers of a CF mutation. If family members are thinking of having kids it might be worth having carrier testing to see if they also carry the CF mutation.
There are options available is parents are found to be carriers, prenatal testing or PGD, if they are trying to prevent CF in another child.
I know CF Queensland has a beautiful kids book about a girl called Hannah who has CF. I was able to get it for friends of ours whose baby (also called Hannah!) was diagnosed with CF.
Cystic Fibrosis
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