we just found out our 8 yr old boy has CF

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gehrigfamily

New member
We live in Tacoma,Washington and would like to talk to other parents of kids with CF. This is all new to us and we want to understand more. We r looking for the purple braclets to wear. We want to know where we can get them?? My son has three sisters too and other sapecial needs too. We just found out on the 22nd of April about our son having CF. If theres anyone that can help us out please do. Our e-mail is momof4rugrats2001@yahoo.com . Thank you very much for your help!! A new family with a child with CF.
 
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rose4cale

New member
First I want to say I am sorry about your son's diagnosis. It is extremely overwhelming at first. You'll find a lot of support and answers to your questions here. Specific questions are always good. I read so many posts that answers questions I hadn't thought of yet.

I think the bracelets can be found at www.milanfoundation.org

Best wishes to you and your family.
 
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anonymous

New member
Sorry to hear about your news. It will get easier the more educated you become about the disease and as time goes by. I bought my bracelets at the Cystic Fibrosis Foundation website. $2.00 each. www.cff.org

Good Luck,
Lynsey -mom of Avery 21 mos. w/CF and Rhett 3 mos. a carrier of CF
 
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thefrogprincess

New member
I am not a parent of a CF kid, I have it myself and I'm 23. But I live in Everett, Washington. I know it feels a lot less lonely to know someone in your area who knows about what you're going through. This is a great site to get lots of answers. And Seattle's Children's Hospital is one of the best CF centers in the country. I was seen there for a few years after moving to Washington when I was 15, and now I go to the adult clinic at UW. If you want to email me please go ahead. thefrogprincess@mail.com
 
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anonymous

New member
Our daughter was diagnosed two months ago, and someone on this site suggested I contact my local CFF chapter, which turned out to be the best thing for us. The last poster kind of summed up how we felt when we first got in touch with other people who were dealing with this, and it was an enormous relief to find that we weren't alone dealing with this. You can contact your local chapter by going to the CFF website (www.cff.org) and then clicking on chapters. I sent an email on a Thursday night and the director of our local chapter called me on Friday. She put me in contact with other mothers nearby, and it was such a comforting feeling talking to other people who could tell me what we would likely be experiencing as our daughter got older.

Other than that, this board has been extremely helpful for me too. I posted several questions when I first found out about our daughter, and I got a lot of supportive answers and advice.

-- Jenica
 
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IG

Guest
The blue bracelets that are from cystic fibrosis foundation say "CFF.ORG (on one side) Breathe (on the other) " I believe you have to buy those in bulk.

The purple bracelets which can be found at the milan foundation www.milanfoundation.org say "Breathe Easy, Cure Cystic Fibrosis" and can be ordered seperately.

I suppose you can get them at ebay but I believe when you order from the sites themselves the profits go towards either research for a cure or families in need.
 
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anonymous

New member
Hi I also have a child/daughter who was not diagnosed until she was 10 years old and she also has a long list of special needs. I was just wondering if they have the same disabilities. you can email me at joanieluc@yahoo.com. It is overwhelming the diagnosis at first of CF, because I kept saying what else can this sweet child have wrong with her but as time goes by you adjust. Not saying it is easy but time will help. Take Care, Joan
 
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anonymous

New member
hi
my name is angie and i have a 4 year old with cf....sorry to hear about your son, but luckily living with cf has come along way as far as medicinie and treatments to help our children live a longer and heathier life. it seems like alot to learn and deal with right away but eventually it just becomes a part of life. it will seem overwelming at first but just remember one thing "god will never give you more than you can handle" i know that got me through a lot of tough times. remember you are both very special parents and you can do this together...my thoughts and prayers are with you.
angela
minnesota
 
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3timesthefun

New member
Hi, I am sorry to hear about your recent diagnosis. It is a lot of new information to take in all at once. As the others said your local CFF chapter is a good place to start. I have three 8 year olds with CF so we have a few things in common. We also deal with various other special needs among our children. Any questions, please never hesitate to ask.
 
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anonymous

New member
just to let you know my 8yr old son was diagnosed 30 months ago. our cf nurse said at the time , with a little hug, " don't worry this is as bad as it gets" it was sooo true . it was a huge shock and a very sad few days. but just trust me , it really does get easier , you just need time to adapt and let all the information sink in. best of luck to you and your family . take care !!!!!!!!!!!! janet, mum to joe.<img src="i/expressions/face-icon-small-happy.gif" border="0">
 
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cherishthree

New member
Hello,
My name is kathy, first I want to say how sorry I am about your sons diagnosis. I also Have three children and two of them age 9 and 4 wear just diagnosed last June. It does get easier and with coincident hard work you will get him to wear he needs to be health wise. Ask all the questions you need to. We will be thinking of you and sending good wishes of good health. Kathy
 
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anonymous

New member
Hi - I too have an 8 yr old boy with cf. I would be more than happy to talk with you. I know for us it has been really helpful to talk with parent who have cf children the same age and a little older. It is very overwhelming in the begining - I wish you all the best and I am here if you would like to talk. Jo Ann - mom of jason - 8 w/cf and Tom 11 - cf carrier
 
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zeeannie

Guest
Hi gehrigfamily! I can't help but feel that actually receiving the diagnosis after 8 years must be a relief in a way. Did you have trouble for a long time with illnesses or did symptoms only just start showing up recently?
We're in Tacoma as well. If you go to the Tacoma CF Clinic, did you go to the parent ed night last month? I wonder if we've met...
Anyway, my daughter is almost 12, so if you have any questions just shoot: zeeannie@gmail.com Or if you feel like getting together...
 
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zeeannie

Guest
Hi gehrigfamily! I can't help but feel that actually receiving the diagnosis after 8 years must be a relief in a way. Did you have trouble for a long time with illnesses or did symptoms only just start showing up recently?
We're in Tacoma as well. If you go to the Tacoma CF Clinic, did you go to the parent ed night last month? I wonder if we've met...
Anyway, my daughter is almost 12, so if you have any questions just shoot: zeeannie@gmail.com Or if you feel like getting together...
 
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zeeannie

Guest
Hi gehrigfamily! I can't help but feel that actually receiving the diagnosis after 8 years must be a relief in a way. Did you have trouble for a long time with illnesses or did symptoms only just start showing up recently?
We're in Tacoma as well. If you go to the Tacoma CF Clinic, did you go to the parent ed night last month? I wonder if we've met...
Anyway, my daughter is almost 12, so if you have any questions just shoot: zeeannie@gmail.com Or if you feel like getting together...
 
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zeeannie

Guest
Hi gehrigfamily! I can't help but feel that actually receiving the diagnosis after 8 years must be a relief in a way. Did you have trouble for a long time with illnesses or did symptoms only just start showing up recently?
We're in Tacoma as well. If you go to the Tacoma CF Clinic, did you go to the parent ed night last month? I wonder if we've met...
Anyway, my daughter is almost 12, so if you have any questions just shoot: zeeannie@gmail.com Or if you feel like getting together...
 
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zeeannie

Guest
Hi gehrigfamily! I can't help but feel that actually receiving the diagnosis after 8 years must be a relief in a way. Did you have trouble for a long time with illnesses or did symptoms only just start showing up recently?
<br />We're in Tacoma as well. If you go to the Tacoma CF Clinic, did you go to the parent ed night last month? I wonder if we've met...
<br />Anyway, my daughter is almost 12, so if you have any questions just shoot: zeeannie@gmail.com Or if you feel like getting together...
<br />
 
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