Moms of Children with Cystic Fibrosis

Hi C.

I was not previously a member of this site but a friend sent me your message. I am a mom of a 22 month old boy with Cystic Fibrosis. I'd be happy to talk to you on the phone or via e-mail as well as give you some great internet resources. I actually started a yahoo group

http://health.groups.yahoo.com/group/chicagolandcfparents/

which is specifically for parents/families in the Chicagoland area who have a child or children with Cystic Fibrosis.

There is a lot of information about the disease and it can be overwhelming at first. Are there any specific things that you were wanting to know?

S.

You can go to the Cystic Fibrosis Foundation website. They have several support groups. People are there to ask question and answer your questions. You can see other children and adults with the disease. The are several options and resources for you. Make sure you go to reputable websites. There are a lot out there that can give you misinformation and worry you.

I have child that has C.F. to. She was very sick when she was born, she almost died serval times. They told me that she would not 2yrs old. She had double lung infection ,her bowel were busted open. She had to have surgery at 21 hours old to try to save her life. My child stay in hospital for 10 weeks then came home for 2 days and back again . This how it went for 3 yrs.
Now she is 18yrs. old and getting ready to college this year. It is shocking at first but it well just become your routine to do all that needs to be done. Let me know if this help you or anyone elsa. @ ____@____.com

Have you seen a genetic counselor? I found out when I was pregnant with my first that I am a carrier....my husband then had to be tested and was negative. Did you know that this ran in your family? I know a little about it if you need to talk, but both my babies were not born with it since my husband was not a carrier. They will have to be tested when they have babies to see if they are carriers as well. Good Luck!
C.

I wanted to just send my love and support since I know this is probably a little frightening and overwhelming. I remember doing research on the topic since it does run in our genes and I remember there was an organization which is like a support group for families who deal with it. Maybe you could do some checking on the web or talk to a genetic counselor about getting involved in a support group with others in your same situation. I wish you the best of luck and just know that this precious baby is still a diamond.

I just wanted to let you know that I am sending you lots of positive energy. I don't know much about cystic fibrosis but I do have a child with a chronic illness, he is vent dependent and trached, so I understand. Feel free to contact me if you need to...

XOXO