[tri-med] Hicham - 5 year old with Trisomy 13 - the Netherlands

Dear members,
 
 After our daughter Fleur (full Trisomy 13)  passed a way I got in touch with 
another Trisomy 13-parent in The Netherlands - Helena. She found me on the 
livingwithtrisomy13-site and told me about her precious son Hicham, who also 
has Trisomy 13 and is still with her - and is 5 years old (!!) right now.
Her current pediatrician is really not so helpful with the treatment of her 
little boy and she would like to have some advice from you  parents. Because 
she has very little knowledge of your language; I suggested to send an email to 
the messageboard for her. Maybe you can give her some good advice.

She is wondering if any of you have any experience in doing a cleft palate fix 
at the age of 5 (+-) (most cleft palate fix-operation seem to be done at the 
age of 1 or 2 ??).

Hicham's lip has been closed already - she had to fight for 3 years to get this 
operation.

Helena really feels very alone in our country, where doctors are 
not very helpful to care for a child with trisomie 13 and she doesn't have any 
other parent-contacts in our country with a living child and we also don't have 
message-boards like you do in America here. 

 Please give her some advice !
 
 Much Love
 God Bless 
 
 Corine 
 The Netherlands

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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