Cystic Fibrosis

Hi C.!
My cousin has cystic Fibrosis also. She just had her 16th birthday in Decembr. I remember her being a lot smaller and petite than the other cousins but about 5 or six years ago, she had a lung transplant. She was doing awesome. She had a horse and was riding all the time, she planned on going to the same college i went to to major in Equine like me. A few months ago however she started to go down hill and the Dr.s told her that her body was rejecting the transplant. She is now on the waiting list for another transplant so really its a waiting game. A friend of mine just got married to a girl that also has the disease. She also had the transplant and is still going strong. I know the stories arent both happy, but i wanted you to know that she can lead a semi normal life. I know when i was pregnant i was contemplating getting the test done, but my stepmother who is a nurse said that both parents have to be carriers and then there is only a 25% chance so i decided against the test. I know im probobly not much help, but i thought i would share my stories with you. I wish you the best of luck
J.

HELLO C.

I'm the mother of a set of wonderful 16 year old twins that have cystic fibrosis and they do very well. I live every day with the worries that you are talking about. The best gift about the children with CF is to smile and live for the day at hand. This is not an easy thing for parents to have to live with but it is much rougher on the child. My prayers are with you as I do no how rough this is and how much you fear what is next. The best thing I have found to do when I am having one of the worrie days is to look around at what I have at that moment, it works pretty good for me. God wants us to enjoy what we have in our hand at the moment. Smile and say a prayer, Tecnology is changing every day who no's maybe in a few more years there may be a cure for it. That is my big dream. Lots of luck it takes a special person to deal with CF.

C.~
I know a family who the dad has Cystic Fibrosis. Just a few years ago he was going down hill very fast when they came across a very high quality nutrition product that has helped him tremendously. If you would like to talk to him or his wife, e-mail me and I will hook you up with them via a 3-way call. (____@____.com) I know others with cystic fibrosis who are seeing postive results using this product.
K.

I babysat for a family with two young children diagnosed young. I assume there are specific support groups. I would suggest looking to the Cystic Fibrosis Foundation. I'm sure they could connect you with people in the area with the same concerns. It is so good to hear she has been doing well...medical advances are amazing so hopefully soon, there will be a cure!

there's a website called thearclink.org that can tell you where to find a support group in your area. www.ddadvocacy.net TARC (Tulsa Advocates For The Rights of Citizens with Developmental Disabilities) has a family support group but I don't know if there is something similar in your area.

Best wishes for you and your daughter to have fulfilling and adventurous lives.

I can we were checked for cystic fibrosis. It was very nearve racking. My daughter is 15 m/o now. Her Cystic Fibrosis was Neg, but they still do not know what is wrong with her. She was in the hospital at 5 m/o with RSV and was in ICU for two weeks and at home with oxygen for 8 weeks. Since then has been hospitalized 2 other times for respitory problems they are not sure why she has abnormal chest x-rays and she get fevers of 105.4 and 103.2 out of no where. I am always worried about her and we keep going tp they pulm Dr and the cardiologist for answers they are still serching. It is very hard on me we never had any health problems with our older daughter now 3 1/2.