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Old 03-05-2013, 01:16 PM   #1
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Question Anyone with Fanconi Anemia?

Our little guy had genetic testing done and we got the results today and he has Fanconi Anemia

http://www.fanconi.org/

I feel like I've been punched in the face, I guess we just add it to the list of things we have had to, and have to, deal with.

just wondering if anyone is dealing with this too or knows anything about it.

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Old 03-05-2013, 01:23 PM   #2
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Re: Anyone with Fanconi Anemia?

I don't but I couldn't read your thread and not offer You guys have been through so much.
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Old 03-05-2013, 01:52 PM   #3
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Re: Anyone with Fanconi Anemia?

Thank you so much

I'm trying to stay positive and be grateful that we found out so early and have a chance to get the bone marrow search stated early and just help him. Most people don't find out until much later some into adulthood.

we just found out today so we have more testing to do now to find out more about him and possible complications etc.
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Old 03-05-2013, 02:35 PM   #4
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Re: Anyone with Fanconi Anemia?

I do not, mama but I just wanted to offer support in any way I can.
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Old 03-05-2013, 09:35 PM   #5
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Re: Anyone with Fanconi Anemia?

I know a lot about Fanconi anemia. I saw your post in a google alert & joined this forum so that I could reply. My son has FA, and was diagnosed March 29,2011. It's the most heartbreaking and unbearable news you can ever receive because it is a devastating disease. If you'd like to send me a private message & tell me your story, I'll listen and I'll even try to help you with as much as I can. In those first few weeks & months the only thing that kept me same was having another parent who I could talk to. Hope this helps.
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Old 03-06-2013, 08:34 PM   #6
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Re: Anyone with Fanconi Anemia?

Huge going your way. I will keep your family in my prayers.
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Old 03-07-2013, 08:05 AM   #7
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Many many and good thoughts being sent to you and your little one. I am so sorry that you are having to deal with this tough news. Your obvious positive attitude is going to really help your son... you are a strong mama. Im sorry I can't help more with info... I couldn't read and not post.
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Old 03-07-2013, 12:15 PM   #8
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Re: Anyone with Fanconi Anemia?

Thank you everyone for the support.

We are really still digesting the news and trying to get our grounding with it. We have told our families and also connected with the Fanconi Anemia Research Foundation and gotten some information and support there.

My husband and I decided we need a date night so a friend is coming over tomorrow night to watch the kids so we can go out to dinner and just decompress and talk about this all. We just need some time together.

I can honestly say reading and learning about his and the 20-30yr life expectancy coupled with all of the issues he will face has made this news heartbreaking.
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Old 03-07-2013, 03:11 PM   #9
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Re: Anyone with Fanconi Anemia?

Quote:
Originally Posted by momgoddesswife View Post
I can honestly say reading and learning about his and the 20-30yr life expectancy coupled with all of the issues he will face has made this news heartbreaking.
I am so sorry. I had never heard of Fanconi Anemia until I read the info in your link. I can't imagine what you must be going through.
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Old 09-02-2013, 05:28 PM   #10
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Re: Anyone with Fanconi Anemia?

Hi there,
I read a post on this forum while researching about FA, I have just come to know that my son has fanconia anemia aswell.. he was born on the 11th July this year.. he has two absent thumbs and a absent radius on his right arm.

I guess I'm just trying to reach out and find parents that are on the same boat as my husband and I....He is our first child... and its been a very difficult few weeks enduring all the testing his been going through..

I hope your little guy is doing well.. and my heart totally goes out to you guys.. all the information given about FA its overwhelming and someday you just wanna sit and cry cos you feel helpless but keep strong things will be okay..

How has everything been for you since you guys have found out about FA?
It would be great if you were able to tell me abit about how your last few months have been as it would shed some light on what we are gonna be going thru.. thank you so much
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