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Raising Special Needs Kids Raising Special Needs Kids

My angel on earth

Posted by on Apr. 9, 2014 at 12:05 PM
  • 10 Replies
Hello. My name is Tina and my 7 month old daughter Gemma was just diagnosed with Krabbe disease. Krabbe is a genetic disease that affects the nervousness system. She will lose all function over the next few months and the disease is fatal in early childhood. I don't really know what kind of group I belong in. But I need other moms who know even sorta how I feel. I need people who know emotionally how it feels when people say stupid stuff. Or how each moment may be the last and how that thought haunts you. Please tell me about your kiddos
by on Apr. 9, 2014 at 12:05 PM
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Replies (1-10):
Bluecalm
by Silver Member on Apr. 9, 2014 at 12:22 PM
I am so sorry. Of course you belong here but have you tried goggling Krabbe disease support to find groups specific to her condition? Also try Chromosomal Disorders Outreach.
iSMILEheCRIES
by on Apr. 9, 2014 at 1:40 PM
Thank you! I have joined a Krabbe family Facebook group, but the disease is so rare only about 30 children a year are born with it and diagnoses is so hard that many families get the diagnoses after the child is really bad off.

Quoting Bluecalm: I am so sorry. Of course you belong here but have you tried goggling Krabbe disease support to find groups specific to her condition? Also try Chromosomal Disorders Outreach.
jjamom
by Michele on Apr. 9, 2014 at 2:35 PM
Welcome. I'm so sorry for all you and your baby are dealing with. This is a very diverse group, differing dx, some rare. The Moms here are very supportive and kind. I'm glad you found us.

My little guy is 8 and has Down syndrome and a few other dx secondary to DS. Before his heart repair I was really scared about losing him, but it was more of a possibility than a certainty. I can only imagine how it feels to live with that fear day in and day out. As far as the stupid things people say, I can certainly relate to that. It sucks!
MamaLauri
by Bronze Member on Apr. 9, 2014 at 3:12 PM

We are here for you. Hugs.


redmummyof3
by on Apr. 9, 2014 at 3:22 PM

 ohh i'm sorry about your baby girl hun my son has a rare defect but it is not life threatening. i found the special needs group is awsome try there!!! il keep your'e liitle one in my thoughts take care and love that baby up

arkansasmama08
by Gold Member on Apr. 9, 2014 at 3:39 PM
I'm so sorry mama
Momof4AEMW
by Gold Member on Apr. 9, 2014 at 4:22 PM

Oh Mama, you fit in here.  We are nothing but supportive!!  I am sorry for the news on your daughter.  I do not know anything about Krabbe disease, but what your post implies is obviously any mother's fears.  

I have 4 children, 3 of which have special needs; down syndrome, hearing impairment, autism, SPD, ADHD, a bunch of global delays and medial issues.  I hear a lot of stupid/ignorant comments, so can empathise with you there.  Hugs Mama!!  We're here for you.  She is beautiful in your picture!

letstalk747
by Joy on Apr. 9, 2014 at 8:56 PM

welcome tina , im joy , you are in the right group

Linagma03
by Gold Member on Apr. 10, 2014 at 1:19 AM

Welcome to the group Tina. Yes this is the group for you. I don't know anything about Krabbe disease either but I do know about the stupid comments. Lina has a rare chromo abnormality and so far is the only one known with it, she has developmental and medical issues. I can't even imagine what you are going thru. 

Prayers for you and your daughter. Hugs Momma! We are all here for you. 

5kidsILove
by on Apr. 10, 2014 at 2:58 AM

Mobile Photo

Maybe you can call these people momma? There are a very small clinical trial group they are using stem cells from unrelated donors and it's working
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