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Moderator
ModChristine
Posts: 1,114
Registered: ‎05-24-2013

Hi from a Mom to a sweet girl with special needs :)

[ Edited ]

Hi there :smileywink: Many of you know me from the Community...I've been around here in some shape or form for over 11 years now.  However, most don't know I am the Mom to a beautiful, amazing, special needs little girl.  I'll address her as "E" in my posts.  If you are here and reading this you may know of a special needs child, have a family member who is special needs or parent one of these amazing children (or adults!).  E has a very rare gene mutation which results in Koolen de-Vries Syndrome. This syndrome is rarely new as it was only founded in 2006.  There are two type of KdVS and E is one of 10 in the world currently diagnosed with the gene mutation and not the chromosome deletion.  E was diagnosed at the age of 5 years old.  Up until that point, she was a mystery to us and her doctors.  E is in mainstream Kindergarten with an aid.  She has numerous medical issues and currently receives speech, occupational and physical therapy.  Would love to hear from others with special needs children in their life!

 

~ Christine ~
Mom to a sweet little girl and 2 busy boys
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Community Manager
Emmys_Mom
Posts: 99
Registered: ‎05-28-2013

Re: Hi from a Mom to a sweet girl with special needs :)

Christine,

Thank you for sharing some of your story. In getting to know you over the past couple of years I must say that E is lucky to have you for a mom! Keep us updated as you and the doctors find out more about KdVS.

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Moderator
ModChristine
Posts: 1,114
Registered: ‎05-24-2013

Re: Hi from a Mom to a sweet girl with special needs :)

[ Edited ]

Thanks so much :smileyhappy:  She's an amazing little girl :heart: I'm super excited that we are having a gathering for KdVS families in July that my family will be attending.  It will be our first time to meet other children with E's syndrome and their families!

~ Christine ~
Mom to a sweet little girl and 2 busy boys
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