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Rina

New Member

Joined : Jan 2005

Posts : 17

Posted 5/30/2005 12:36 PM (GMT -7)

Hey everyone I usually post in the Anxiety/ Panic Forum but when I saw this forum I had to come check it out. I dont have CF but I volunteered at a Childrens hospital where I live and I was always working with the CF patients. I came really close to this one patient he was really cool and he wanted to be the first CF patient to go to the moon. Well In january he was 15 and his time on earth was up. I have been working through this for a while but i know that he is in a better place and COUGH FREE!!! on a lighter note I worked with a girl who recently got a lung transplant and she is expected to live a long healthy life. I am sorry if i have depressed anyone but no one I talk to understands how special CF patients are and why it hurt so much to lose this little boy.

Thanks for listening and God Bless.

Rina

kristins mom

Regular Member

Joined : Sep 2005

Posts : 27

Posted 12/15/2005 4:05 PM (GMT -7)

Hi Rina--just wanted to say hello and that it is comforting to know that someone who doesn't deal with CF as a daily part of life realizes how special CF kids really are. I am the mother of 2 CF kids--my 7 year old son that never fails to bring love into any room he enters and my 10 year old daughter that grew tired of the fight and lost her battle with CF in 11/00. My daughter touched everyone she met and taught so many the meaning of strength, faith, and a love for life. She lived each day to the fullest and endured whatever treatments, tests, etc. she had to if it might help give her another day. My son still suffers from the emotional traume of losing his sister but is making progress, they were extremely close. When she found out I was pregnant (she was 7), she made the remark to her pulmonologist that she hoped her brother had CF. I was floored but her doctor assured me that was a common reaction, Kristin wanted someone to understand her and how she felt. People so often made comments or reacted to her coughing spells in ways that made her feel "like a freak"(her words), or once they found out she had CF avoided her because they didn't understand the disease that she began wondering if she were "abnormal". Thank God we had a wonderful medical team at Cook Childrens in Ft. Worth and they intervened and made her realize how special she really was. She soon became quite the little outspoken spokesman for kids with CF and would quickly inform anyone of how strong and special CFers were. So when someone outside the CF family speaks out about the emotions and trials these kids go through each day and realizes the fight these kids put up just to have a tomorrow, it touches my heart. Maybe someday, more people will realize what CF is all about and show compassion & support instead of ignorance & avoidance. My son still has a chance of a cure someday but until that happens, every person that realizes what special kids these really are will help make their battle a little easier. Thank you for listening and thanks even more for caring.

Twinstride

Regular Member

Joined : Sep 2005

Posts : 318

Posted 12/19/2005 2:00 PM (GMT -7)

Kristins Mom.....I'm thinking about you!

Kathy, mom to identical twin boys with CF (9yrs), daughter 20, grandaughter 2 1/2, one on the way!

If there is a CURE for Cystic Fibrosis this very moment and this is "not soon enough"...you would hear this twins mom "Across America" "YESSSSSSSSSS"!!.

Moderator, Cystic Fibrosis. "If there is questionable doubt, check it out"....with your healthcare provider!. We are here to offer support, encouragement, and answer your questions as best we can. Don't hesitate to step on in and enjoy!.

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