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----- Original Message -----
From: Krystal Germiquet
To: No Reply
Sent: October 29, 2006 12:27 PM
Subject: Re: [UndiagnosedOvergrowthSyndromes] Digest Number 222
Hi Maria,
I am a member of the Soto's group as well as we believed that both our sons (Rowan, 6 and Liam 14 mths) had it. The NSD1 testing came back negative however. We are now awaiting the results of the PTEN testing ourselves so perhaps my boys also have Bannayan - which is now referred to as Bannayan Riley Ruvalcaba Syndrome (a combination of Bannayan Zonana and 2 others, Riley-Smith and another one) or BRRS. There There are a couple of groups that deal with this, however they are as inactive as this one. I am at a friends house and do not have any pictures to send right now, however when I am at home I will send you a picture of my boys. Would you mind sending me a picture of your son Liam
Good to hear from you
Krystal
Message
- 1.
New here
Posted by: "mariaandliam" mariam8564@... mariaandliam
Sat Oct 28, 2006 12:19 pm (PST)
Hello!
My name is Maria and I have a son Liam who is 27 months old. A while
ago I was a "lurking" member of the Sotos Group as I was suspecting
that my son might have it. Well he ends up having Bannayan Zonana
Syndrome. We just found out about this through a PTEN gene test.
Anyone else here with a child with this Syndrome?
Thanks so much!
Maria
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