Noonan Syndrome's parent, let share...

HongHei

My son will start primary 1 this coming sept.  He is very short and thin, walking and running are weak, easy to fall down in the street or floor.  Therefore, I keep remind him to concentrate to walk and run, keep balance well. Any Noonan Syndrome's parent can share their kid's school life during Primary school?

mrsliu1991

Hi,

My daughter is also a Noonee.  She is 5 and 1/2 years old but she also got the global delay.  She will attend Primary 1 in Year 2007.  What special attention should we pay for them?

HongHei

Dear mrsliu

I wonder how many people know Noonan Syndrome.  My son is 5 and 10months old.   I put him into the international school Y1 = K3, delay him one year for primary 1.  Last year Dec, doctor from  Genetic department - Queen Elizabeth Hospital mentioned that they might build up sharing group for Noonan's parent. This is good thing to us.  However, I got nothing from them almost half year.  I hope that someone can share their experience with us.     

mrsliu1991

Hi,

I went to QE Genetic Dept on April 2006 for consultation, but they didn't mention that they will form a sharing group.  I check on web site, and found that a large sharing group in formed in Maryland.  Can anybody to share more experience on teaching these children?

HongHei

Dear Mrs liu

Would you plese send me Maryland's website?  

I might call QE Genetic Dept for sharing group status.  If I got any news, I will let you know.
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mrsliu1991

Dear Hong Hei Ma Ma,

Here is the web site for the sharing group.  You may contact them and they will send you some information about this syndrome.  Hope this will help.

http://www.noonansyndrome.org/home.html

HongHei

Dear Mrs liu

Many thanks