Friday, August 8, 2008

A Cms friend from Athens, Greece!

Hi everyone, meet Constantine below. She's 7yrs old from Athens, Greece and has CMS.

Her Aunt Yiota speaks and writes in English and sent me the following email about Constantine. She's a precious little girl and so very loved!

FROM YIOTA (a cut/paste of her email to me)
I am very happy to hear from you.
I believe that is very important for all of us to be in touch, support each other, exchange information.
There is not really much information for CMS, most doctors don't even know it and most of the times we fell very lonely. I'm sure you understand all this.
We can not understand how it came. No one in the family has it, at from so back relatives can remember. I hope that when we have news on her DNA things will clear up for her and all members of the family.
Constantine is on Mestinon, she takes it every 3, 31/2 hours (not during sleep). I wouldn't say that it always work. It seems that if she goes through a bad period nothing really helps.
Yes, when she is sick ( temperature, flu) she becomes weaker. She also had some light form of asthma, and until last year she used to get sick very often, do musks etc. She would get everything that was going around in the school. What helped us on this is that we started Homeopathy. I don't know if you ever heard of it (its an Alternative medicine theory), but we really saw a big difference. Her health has improved very much and she deals with colds much better.
To give an example, this year (from September) she got sick 2 times, us to the last 2 years that she would be in bed 6 to 7 times.
She goes to regular school, 1st great. She is very clever and has an artistic talent. For the moment she doesn't use a wheelchair. She can walk, but short distances and she needs help with stairs. When she is good she can do it but herself. Other kids are very supportive, but she compares herself with the other children and she comes up with all these, sometime difficult to answer questions.

This email is at work and I am here every day (M-F) from 11 to 19 local time.
Nice talking to you.
I am sending you some pictures to see Constantine and her mom.

Very very nice talking to you.
We will chating for sure.
Kisses to Luke
and of course You, for all you do for him.


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