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Posted 5/17/2004 3:19 AM (GMT 0)
My five year old daughter was recently diagnosed with CF. Since then we have been bombarded with information about the disease and have done alot of our own research.
I am trying to find a network of parents of CF children to regularly talk to about the little and big things involved with raising CF children and fighting the disease.
We see a CF Team at the CF Center through the University of Minnesota/ Minneapolis Children's Hospital. They have been very helpful and informative.
If you are interested, please post a reply with your email address, etc. Thank you and God bless you all.
Hopey's Mom
Posted 5/17/2004 11:48 AM (GMT 0)
Hopey's Mom
I am Andrea and my daughter is 5 & 1/2 with CF. She was diagnosed at 9 months. Feel free to visit our family site at http:groups.msn.com/teamRachelJane or contact me at [email protected]

or go to http://groups.yahoo.com/group/cfparents That is a wonderful group of parents, patients and loved ones who support eachother and ask/answer questions, and generally give you a place to voice your concerns. If you have a problem or question, the chances are that someone there has been there or done that already and will be happy to offer thier experience.
Andrea
mom of Rachel 5 & 1/2 with CF and a boy on the way, no CF
Posted 5/17/2004 5:44 PM (GMT 0)
Hi, I'm a mother of a 16month daughter with Cf. We found out she had it while i was still pregnant .

Life wiht my daughter hass been great yes there is a lot to learn with this disease but i meet new people everyday that have children with it. It's always great when you here good news how well other children are doing and to let them know how your own is doing . so if you ever want to chat or e-mail me its [email protected] or [email protected] .

Proud mom of Alyssa

Amy

Posted 5/24/2004 3:12 AM (GMT 0)
hi my son is seven years old and has cf. We dont have much of a support system so i was looking for some parents of children with cf to chat with. He is doing well but has developed polups. he was diagnosed with cf when he was 1 month old. and thankfully has only been in the hospital twice. if anyone would like to chat with me you can email me at     :-)    [email protected] or [email protected] thankyou and godbless.

Post Edited (honeybear) : 5/24/2004 3:14:45 AM GMT

Posted 7/3/2004 12:16 AM (GMT 0)
Hi, I have a 17 year old son with cf. It has been a long journey and as he gets older it seems to get even longer and harder. Does anyone out there have any suggestions on how to deal with a teenager with cf.
Posted 7/25/2004 7:08 PM (GMT 0)
I have a 6 year old daughter who has CF. She was diagnosed at 3. I would love to communicate with other parents about their children. If you are interested please email me at [email protected]. :-) yeah
Posted 7/29/2004 6:29 PM (GMT 0)

Dear Hopey's Mom -

My name is Sarah and I work at the Minnesota Chapter of the Cystic Fibrosis Foundation.  We are fundraisers, and raise money for CF science.

There is a group of parents/CF patients who live in Minnesota and have formed a CF Support/Community Group.  You can find them at:  http:\\health.groups.yahoo.com/groups/CFCommunity

The hold meetings and parties to support and help each other.

If you have any questions we are here for you - 651-631-3290.

Posted 9/2/2004 7:18 PM (GMT 0)
My name is Mark I'm a parent but I'm the one with Cf
Posted 9/27/2004 1:25 PM (GMT 0)
Hi im nicky my daughter jody is 14 and a half with cf, she also has liver disease and weve just found out she now has diabeties related to her cf . I found out jody had cf at 6 weeks old. Would just like to say if anyone wants to chat post a reply its nice to know there is someone out there who understands what we as a family go through.
Posted 11/23/2004 1:42 AM (GMT 0)
Hi my name is Liz and I have 2 children with cystic fibrosis. My daughter is 18 years old and had a double lung transplant last year. My son is 13 and is on a waiting list for a liver transplant. Both children are diabetic and insulin dependent.It's been a struggle at times ,but also a blessing.It's amazing the strenth and courage they have.
Posted 12/4/2004 4:25 AM (GMT 0)

My husband and I just found out that we are both carriers of the CF gene.  We had planned to start a family in the next year or so.  We obviously now have some difficult decisions to make and wondered if any parents of children with CF have any advice for us.

Posted 12/6/2004 5:55 AM (GMT 0)
EKL
I have a two year old daughter with cf. My wife and I are expecting our 2nd. We did IVF. They can test the embryos before they put them back. I have also met people who have rolled the dice. It is a tough choice. You have to do what feels right to you. Good Luck
Posted 12/10/2004 3:13 AM (GMT 0)

laxwho,

Thanks for the reply.  We are going to see a specialist in January and will hopefully get some more information on what our choices are.  Best of luck to you and your family!

Posted 12/10/2004 11:01 PM (GMT 0)
I have a 20 year old daughter with cf. We are very interested in a support group. It seems to be tough sometimes for families to share with others when this diease effects each person so differently. But we are looking to share experiences and strength and hope. feel free to contact us at [email protected]
Posted 9/29/2005 7:18 PM (GMT 0)
Hi Hopey's Mom,

I have a daughter that was diagnosed when she was 3, she is now 15.  She has had a bumpy road.  She has Cystic Fibrosis along with Acid reflux disorder, which complicates the CF.  She is doing really good now.  She has always had trouble gaining weight and height (failure to thrive) but in the last few years she has been putting on the weight and has been getting taller. 

 

We, my husband and I, Have to give the credit to the all natural minerals and vitamines we have started her on two years ago.  She has had less hospital stays and her lung function test have been really good the last few time we have been to the Doctors (Pulmonary).

 

My e-mail is [email protected]  would love to hear from you and chat at time if possible.

 

Suzzie. :-)

Posted 10/10/2005 12:39 AM (GMT 0)
i have a one month old daughter that has cf and i would like to know if anyone would like to share resouces that they use for there children if so please email at [email protected]
Posted 4/29/2009 7:25 PM (GMT 0)
hi my name is kelly i have 2 daughters with cf one aged 8 and one at 5 weeks feel free to email me any time at [email protected]
Posted 6/9/2009 9:26 PM (GMT 0)
turn   tongue yeah hi kelly my son is 2 ihave picked smiley icons because after 20 operations and spending the first14 monthsof his life between the operating theatre and intensive care this is all guy does smile today he started preschool and it broke my heart yo see him go but he loved it if you want to talk my email is [email protected] take care godbless
Posted 6/24/2009 1:03 PM (GMT 0)
Hi Hopey's mom,

   I have a 16 year old son with Cystic Fibrosis.He was born with a meconium plug and was diagnosed with he was a baby. His life long Jurney hasn't been so easy because he also has Epilepsy and is not a very healthy cfer. His Lung Functions now are not very well and can't do much with his friends, but he still makes it though the day happy as ever.

 

My Email is [email protected]  , would love to here from you.

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