Diaper Swappers

momgoddesswife · 03-05-2013, 01:16 PM

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.

MDever · 03-05-2013, 01:23 PM

I don't but I couldn't read your thread and not offer

You guys have been through so much.

momgoddesswife · 03-05-2013, 01:52 PM

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.

kai_e · 03-05-2013, 02:35 PM

I do not, mama but I just wanted to offer support in any way I can.

Canfish16 · 03-05-2013, 09:35 PM

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.

sup3rmom2logan · 03-06-2013, 08:34 PM

Huge going your way. I will keep your family in my prayers.

looking8186 · 03-07-2013, 08:05 AM

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.

momgoddesswife · 03-07-2013, 12:15 PM

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.

BSWmama · 03-07-2013, 03:11 PM

Quote:

Originally Posted by momgoddesswife

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.

03-05-2013, 01:16 PM	#1
momgoddesswife Registered Users Join Date: Dec 2012 Posts: 341 Ratings: 2 Feedback: 100% My Mood:	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. __________________ Aim Vegan, BWing, mama to our 26 wk Micro Preemie miracle Cazzy. Kicking Fanconi Anemia's Butt NEGU "It's the little details that are vital. Little things make big things happen.~John Wooden" ISO: WCW cuffed longies or bloomers size Small

03-05-2013, 01:23 PM	#2
MDever Registered Users Join Date: Apr 2011 Posts: 5,339 Ratings: 33 Feedback: 100% My Mood:	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. __________________ Melony-Wife to my AMAZING DH Roger and SAHM to our tribe. DD1 Emmaleigh 1/02,DS1 Avery 8/03,DD2 Ainsley 9/05, Bonus T 8/06 & DD3 Poppy 12/10, DS2 Fionnlagh 2/13 we are a crunchy, CDing, EBF, bed sharing, babywearing, intact, very cautious/delay vaxing, ERF, homeschooling FAMILY.

03-05-2013, 01:52 PM	#3
momgoddesswife Registered Users Join Date: Dec 2012 Posts: 341 Ratings: 2 Feedback: 100% My Mood:	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. __________________ Aim Vegan, BWing, mama to our 26 wk Micro Preemie miracle Cazzy. Kicking Fanconi Anemia's Butt NEGU "It's the little details that are vital. Little things make big things happen.~John Wooden" ISO: WCW cuffed longies or bloomers size Small

03-05-2013, 02:35 PM	#4
kai_e Registered Users Join Date: Feb 2008 Location: SE Connecticut Posts: 1,260 Ratings: 42 Feedback: 100% My Mood:	Re: Anyone with Fanconi Anemia? I do not, mama but I just wanted to offer support in any way I can.

03-05-2013, 09:35 PM	#5
Canfish16 Registered Users Join Date: Mar 2013 Posts: 1	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.