Help

[LEVEILLE69]

Please help... We just found out that my First Daughter of two weeks old was screened for CF in bloodwork and came back positive.. This was very devastating to us of course, both my Aunts were diagnosed with CF when they were younger.. My one Aunt is 45 now and my other Aunt has passed on.. As if this was not enough to all take in, but now I've recently found out
That my Aunt cannot have any contact. With my Daughter, My aunt has been through soooo much and this child was a huge positive in my Aunts life and now it has been ripped away from her I feel soo bad and horrible and we just can't seem to come to grips with all this
I can't imagine our family christmas's and gatherings now, is there any hope in my future? Or something we can do about this? My Aunt is my daughters role model and inspiration to us all and I can't imagine being distanced from her... Please Help

 

[Aboveallislove]

I am so sorry for the heartache you have now. I know how horrible that newborn diagnosis is and am so sorry you have the added pain of having a dear aunt with CF and all that means. I can tell you that CF today is so much different with so many better medicines and so many that are almost a "cure" right around the corner. Please let me know what specific things would help you to know as you struggle through these early days. Hugs and prayers.

 

[Printer]

There are some bugs that can ONLY be transfered between CF patients. We have "the three foot rule". It is best if they can stay 3 feet apart.

My niece, non CF, was born at a time that I had a very bad, unexplained cough, her Mom and I were both brokenhearted that I couldn't/wouldn't hold her. Trust me it will work out.

Bill

 

[LEVEILLE69]

Thank you guys sooo much for your experiences, it's nice to hear positive stories, I had a sweat test myself today with positive but a mild case of CF, this will not stop me from living my normal life, as its the beginning of a new one! Iam very hopefull that one day they will find a Cure. With everyone's hard work and contributions... Thanks again...

Derek..

 

[JustDucky]

Oh my! That must have shocked you..not only having a baby with CF but a diagnosis for yourself as well.. I was a late diagnosis as well at 33, kind of incidental after growing CF bugs out and having many symptoms that were overlooked for years. You have come to a great community, any questions, just shout 'em out!

Jenn 40 wCF

 

[LEVEILLE69]

Thank You soo much Jenn.. It's been the hardest weeks of our lives, but found out that 99.5% I should not of been able to have a child.
So she is part of that .5% so it's mostly a blessing, and also without my baby girl I would not properly been diagnosed.. So she's a miracle baby and an Angel sent to us.. So ill feed off of the positives to keep my head up... Thanks to everyone.. You guys are great!

 

[Aboveallislove]

What a true blessing you have! Also, something I want to throw out for you as you move forward: If you are just now getting diagnosed, you likely have one (maybe even 2) mutation(s) with some/lots? CFTR function for which Kalydeco should work! Hopefully your precious daughter got that mutation too from you! Kalydeco is a near "cure" for some mutations. If you don't know yours/your daughters, I'd find out asap and then post for folks to give you guidance on Kalydeco. And there are meds in the works now that will hopefully be the near "cure" for other mutations in 5 years. hugs and prayers.

 

[LEVEILLE69]

You made me feel so much better. Thanks ill look into that, Im confident that one day soon we will all beat this.... Lots of love...

Derek