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Name: sally
[ Original Post ]
I have the most beautiful 6 year old daughter in the world, for the last two years she had been getting asthma or so the doctors thought ,they put her on ventolin ,then a preventer and steroids as she always got a chesty wheeze. After going to the doctors again for like the 6th time in two months they finally sent me to the childrens hospital for tests. She had to do a sweat test a blood test and a cat scan of her chest.
The sweat test came back positive for cystic fibrosis I was devestated.She has a life span of 30 so she has 24 years left maximum. This is a disease they are suppose to pick up at birth but hey it didnt get picked up.
So if your child ever gets persistent chest infections keep going back to the doctors until they listen to you because you need to trust your instincts, your there mum you know your children better than anyone else.
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Name: Helene | Date: Feb 10th, 2006 10:35 AM
incase u would like to email me, my email address is Helene_hedman@hotmail.com
My son has cystif fybrosis, he was almost 4 when i got told he had it. Yes very scary, in time it does get easier, and just because they say around age 30 dont believe it, be postive and follow ur heart . I found it best to talk to ppl goin through the same thing, but for some reason most ppl dont want to talk , they want to hide, they dont want here kids to be known as different, well my son is 13 now and he has his ups and downs but it gets easier to deal with, just take one step at a time and dont think about the life span think about the now, cuz who knows wat could happen they could get hit by a car tomorrow, they may find a cure b4 we even have to worry, im here if u ever want to talk, email me, always glad to help, through my experience and always know doctors are not always rite, follow ur heart and everythin will be alrite, take care hope to hear from u 

Name: jenna | Date: Feb 26th, 2006 12:09 PM
My name is Jenna, my fiance has CF, he is 22 now and was told he wouldnt live past his 21st birthday. This just goes to show that doctors are not always right so dont get down about the situation. I find it heard to deal with and get upset about it regulary. My fiance deals with it really well. He has a chaest infection at the moment and is on anti biotics. The doctors that we have arent very goods with CF and dont understand the severity of it. 

Name: stephen walsh | Date: Mar 18th, 2006 7:09 PM
Hey Sally,
My name is Stephen and I have cf, I am 16 years old. I also have a bro 11 with cf and a sis 25 with cf. we are all fine. look i know a 73 year old with cf and a 55 year old. Dont listen to your doc 30 years maximum ....... a load of crap. look if your 6 year old managed to make it to 6 without being detected she have it mild. look email me at koalawalsh@hotmail.com your daughter will be ok .... it aint all doom and gloom also ill show you a site with alot of cf adults. Please email me 

Name: sally | Date: Mar 22nd, 2006 4:27 AM
hey stephen thanks so much for your input really appreciated it. so nice to hear from someone who actually has it and yes you are right she does have it mild to look at her now you could never tell.thanks again i really appreciated it it has made my day! 

Name: kye | Date: Apr 19th, 2006 5:16 PM
hello,
how are you doing there,please mail me back i will help you out kye_mya@yahoo.com.i will be expecting you mail.

cheers 

Name: Ro | Date: Apr 22nd, 2006 7:55 PM
CF is not a death sentence. I have 3 children with it. My daughter wasn't diagnosed til age 6 - I had already had 2 other children! 


Name: lou | Date: Aug 31st, 2006 11:58 PM
Hi, I'm 38 yr old woman w/CF, I even have a set of 4 yr old twins. 30 PHOOOEY!!! Treat her like she doesn't have the disease. We are living longer and longer!! My brother in his 30's also has it! God Bless! 

Name: JAB | Date: Sep 16th, 2006 12:56 AM
I have met children with CF who have been helped drastically by adding glyconutritiionals to their diets. I can get you in touch with the families if you like so they can tell you all about it and how their children responded. I would love to get you the information so you can check this out. my email is darellandjean@ccountry.net if you would like information on this 

Name: Patricio | Date: Jul 16th, 2007 2:41 AM
Am 13, I have CF. I've live with it every day.Am done with it.I have chosen not to have a transplant. I don't like the daily pain , the daily pain on my mother. I was told I would live til 20 maybe 30.but truth be told.when you what out you what out.I was woried about my my mother, being alone. I have a brother whom i love with all my heart and i know God sent him, so when am gone. He would take care of my mom. I wish that everybody would understand that when we are ready to give up. we are ready.stop being selfish. we hurt.. it hurts to take a breath.and I know there are alot of moms fighting for their kids..but listen to them..when we are done. we are done. not because be we gave up on you guys, but because we want to be @ peace. we knew you love us, and you did everything 4 us. 

Name: Gina Fine | Date: Aug 22nd, 2007 3:33 PM
Your daughter does not have a maximum life span. My daughter was diagnosed at the age of 3. She is now 4. The doctors and I expect her to live a long, happy life! If you do the treatments and everything your doctor tells you, She won't have any major problems and She could even live to be 65 years old. I say that because I know someone with CF who just turned 65. 

Name: Gina Fine | Date: Aug 22nd, 2007 3:42 PM
I have a 4 year old with a severe case of CF. What I don't understand and maybe ya'll can help me with this, is if you have at least one child with CF and you know that your chances of having another one with the disease, Why would you do it???? I don't understand people with children who all have CF! For one thing, Don't you already have enough on your plate without adding one more child to the equation? And secondly, why would you put another one through all of that?? I'm trying not to judge, however, I am curious and would like to here from someone in this type of situation. Thank you for reading. 

Name: Flor | Date: Aug 24th, 2007 1:01 AM
hi my name is Flor ni have cf. im 16yrs old. n having cf has been so hard for me in this pass years. i wish i didnt have this. i never had meet somebody that has cf like me n i would like to talk with somebody that does. i need someone that has been through all this crap. 

Name: Jess | Date: Apr 7th, 2008 1:10 PM
hey i have had 3 cuzins with it...all of whom are dead right not and then my aunt and uncle had decided to have more kids and they ended up with twins...the oldest twin has CF and the yougest doesnt.....its horrible i know...just charish every moment you have with ur daughter.....ohh if you want to email me back my email is sessha_14@msn.com 

Name: Jordan Magsamen | Date: Apr 14th, 2008 1:37 AM
Hello sally! i am a child with Cysitc Fibrosis, are you involved in any of the walk or fundraisers?
here is my email. if you have any questions i am here to talk to! keep stron!! =)

jordanmagsamen@hotmail.com 

Name: jose | Date: Apr 15th, 2008 5:49 PM
how do u know you have cystic fibrosis? 

Name: sharneisha hampton | Date: May 30th, 2008 6:43 PM
hi my name is sharneisha hampton im doin a research paper on cystic fibrosis. may i interview u i would have to ask u 8 ? 

Name: Brad | Date: Jul 19th, 2008 11:24 PM
Hello
I was told
I would not make it to 12 with Cf, I am now 51 and I have a brother 59
and a sister 45 we all have cf, It is not easy, we have all been sick through the years , hospitals are a 2nd home,
But I am Still Here at 51...... orry Doc, you were wrong.... 

Name: Dianiashia | Date: Sep 9th, 2008 5:20 AM
My 2 yr old little boy went to a specialist today for constipation and now they want to do a sweat test. The test is over a month away which is insane!! I have read all the symptoms and I really do not think that he has it...Just because of constipatin. I am so desperate to learn more. If u have any advice please help my email is DDPitts99@bellsouth.net and I want you to know I will pray for your little girl as well as you and your family. 

Name: kenna | Date: Oct 3rd, 2008 1:21 AM
ok i am i am 11 yrs old and i have had cystic fibrosis snice the day i was born and i am homeschooled and i do not know anyone if cf but it is hard living it but you have got to do hat you got to do is all i can say thanks 

Name: Tonya | Date: Oct 26th, 2008 2:31 AM
I am a proud mother of 2 children a boy and girl who both have CF. My husband and I didnt find out until our son was born whom was born second. WE have always wanted 3 children, however not sure of what life would be like with CF by our side. I must say, we would never trade in our babies and everything happens for a reason, I say more power to all those who have a positive outlook on life, regardless of what life gives you, you take it, be proud fight it and always remember there is worse out there. Our children are healthier every year, which we are thankful for and proud to know the work you do to support them each day pays off. For those questioning why would you have another....we are hopeful to concieve again, call it selfish if it helps you, but we call it a miracle given to us once again. Take life by the horns, dont ever let anything esp. CF take you down. Always live life to the fullest, because as people say...you REALLY Dont ever know what will happen tomorrow. My advice look for people who truly support you and dont pass judgement, this will give you power to fight CF. Find a walk location, or as we did start your own walk-Fonda N.Y. Great Strides-6th annual this year....all because "people" cared & believe a cure will be fought. From the day he and then she was diagnosed we decided we will not be parents to sit back and wait for the cure we will be parents who stand up and celebrate when the cure is here, knowing we did all we could to make it happen-just like you can! God bless, remember to smile each day, because you are here. I would love to hear of other parents who have concieved after having children with CF-anyone aware of the procedure to take out CF genes when concieving-curious to here thoughts-of course the positive is always welcomed. 

Name: p['p' | Date: Nov 10th, 2008 5:47 PM
l;p; 

Name: hi | Date: Dec 10th, 2008 4:47 PM
heyyy 

Name: beth | Date: Dec 10th, 2008 4:47 PM
heyyy i fell so sorry for u ppl 

Name: deaton | Date: Dec 10th, 2008 4:49 PM
sorry 

Name: nikki | Date: Jan 8th, 2009 10:54 PM
hay i am 14 years old and livein wiv cf i have two other condishons as well life is difficult but me and my family cope i am the only one wiv cf in my family i have a brother and a sister both yonger than me if any one wanna chat send me a message thanks... 

Name: nikki | Date: Jan 8th, 2009 11:00 PM
there proboly no one on here to day 

Name: patricia | Date: Jan 21st, 2009 8:55 PM
i'm 20 an just found out thursday that my 5 week old lil girl has cf when i found out i thought the worst cause a close friend of my famliy had it an died 15 years ago he waz 22. the doctors tell me that she might live 2 b n her 30s or 40s . i still dont no much about it but if someone could tell me more about it i'd really like 2 no. my email is beth.08@hotmail.com i also have a myspace carebear_lover1988@yahoo,com 

Name: Tracy | Date: Jan 26th, 2009 1:19 AM
I have a daughter with CF. She was diagnosed at 4 months old. She was only 8 pounds. Now she is 12 and fairly healthy and I do not pay attention to the median age. As long as you make sure treatments and medicines are done correctly things should go fairly well. That is not to say that you will not have your bad days or weeks or year but it will definately help. and the median age is going up very fast. Hopefully they will have a cure soon. They have the defected gene now they have to figure out how to overtake it.
I am here if you need me. 

Name: jennie | Date: Feb 2nd, 2009 4:43 PM
hi sally i know the shock you must of had when you found out but as i was a perent of a child with cyctic fibrosis for 18 years 2 weeks and 3 days , i can tell you its not only the cf you will hae to dl with its their mental state when they become teenagers , my son was 18 and had a mental break down coz he thought he had nothing to live for and killed him self so a frightening as it may be to you plz look at the bigger picture, as its not the length of time they have its the quallity of life they have , what i am trying to say is plz don't over spoil her becouse she is ill and you want to give her every thing becouse they will always feel defferent and not special, i wish you all the best for the future and hope they find that cure xx 

Name: christine | Date: Feb 12th, 2009 12:02 AM
hi, i have a daughter with cf, she is 9 and was diagnosed when she was 7. i have to say thatbecause she was diagnosed so late , her lungs r scared and her doc says she has mild lung dicease. i think as long as she does her meds right and her vest machine the way she is supposed to things will be fairly good . of course there will alwys be bumps in the road. but i also have to say that since she has learned about her illness she has been more aggresive in her behavier and not in a good way. does anyone else have this problem ? 

Name: Ellie | Date: Feb 17th, 2009 9:53 PM
i'm a 15 year old girl living with CF. i was diagnosed when i was 2. The doctors say i'm only gonna live to be 30. that means my life is half over. i don't let that get me down. actually, just last year when i was 14, i got my 2nd lung transplant. the 1st was when i was born. something was wrong with my lungs, but whatever. i deal. it was scary for my father and older brother (9 yrs older than me) to hear that i had CF. it was scarier for me. i usually try and hide the fact i have this disease, but it's gotten harder and harder to hide. just keep your chin up and look on the bright side. it makes living with CF a whole lot easier 

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