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My baby may have a life threatening disease :(

Posted by on Apr. 27, 2012 at 5:18 PM
  • 50 Replies

My 9 week old was born with birthmarks covering half of her face, and several different areas of her body.  Her pediatrician wanted us to see a geneticist about it.  We went today, and they think she has something called it may be something called CM-AVM Syndrome.   It can cause seizures, mental retardation, abnormal bleeding, heart failure and can be life threatening .  They tested her for the RASA1 gene to hopefully rule this out.  The results will take 6-12 weeks to come back.  Please keep us in your thoughts.  I am a nervous wreck.  :(

UPDATE:

I feel like a huge weight has been lifted off of me because at Kimber's specialist appointment today, he didn't seem to think that any of the capillary malformations were attached to her brain, but referred us to a pediatric ophthalmologist to check to make sure they aren't going to harm her vision. He also suggested we have laser therapy done on her face, to minimize the appearance of them. He said that some children have to have as many as 30 treatments by the time they are 6. Please continue to keep us in your thoughts.  They still haven't gotten the results of her genetic testing, but this is a step in the right direction :)

by on Apr. 27, 2012 at 5:18 PM
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Replies (1-10):
ColtsFan1912
by on Apr. 27, 2012 at 5:21 PM

how scary. y'all are in my prayers

Bri060492
by Bri on Apr. 27, 2012 at 5:21 PM

First she is adorable.

Second I will keep you in my thoughts. I would light a candle for you and your daughter but I have none with me as I am on vacation.

shivasgirl
by Platinum Member on Apr. 27, 2012 at 5:22 PM

 she is gorgeous, look at those eyes...prayers for your family

IncognitoOne
by Angela-Marie on Apr. 27, 2012 at 5:23 PM

I'm sorry! She is beautiful!

Praying for you and your family.

xoxoDanicaxoxo
by on Apr. 27, 2012 at 5:24 PM
She's beautiful, I will keep you in my thoughts.
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3lilmonsters88
by ★amber★ on Apr. 27, 2012 at 5:25 PM
She's beautiful. Praying everything comes out OK.
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SadiasMomma
by Janet B. Benson on Apr. 27, 2012 at 5:26 PM
prayers and hugs.

she is absolutely beautiful
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momtoBrenna
by Silver Member on Apr. 27, 2012 at 5:46 PM
Positive thoughts sent your way!
little.knickers
by on Apr. 27, 2012 at 5:47 PM
She is absolutely beautiful!! You will be in my prayers. Be sure to update xx
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18hearts
by on Apr. 27, 2012 at 5:47 PM

I'm sorry to hear this. My daughter was born with Proteus Syndrome and we were told she wouldn't live to see her first birthday. She turned three this year. Its scary not knowing. :( Big hugs! If you need to talk to someone feel free to message me.

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