The whole family on Janurary 5 2001
The whole family on Janurary 5 2001
Andy is the first one in our family to express the MASA (CRASH) syndrome.
That is because this mutatuion developed first in my case (Andy's mother).
I, Silvie, am carrier of the "MASA gene".
This is my homepage which, in our case, means that I am the one to create the texts, do the planning, make the drafts for the illustrations and so on. Thank you to Jens and René for their support.
With my homepage (and by writing e-mails) I mainly want to inform and help parents whose children suffer from the MASA (CRASH) syndrome or similar diseases. Sometimes, however, I also answer questions from docters (e.g. give addresses for molecular gene analysis etc.) and so on.
In addition to this my homepage contains more and more information for all parents who have children with disabilities. This is mainly the case because many things (for example a hypotonia of the muscles) are part of many different diseases and thus many parents need many similar tips like those who have children who have the MASA syndrome.
If requested I can help parents of children with L1CAM diseases to get into contact via internet. (Please send e-mail.)
Apart from that, maybe we'll support one another and maybe we'll also laught together sometimes (which isn't a sin only because your child is ill!).
Sometimes I do not manage to answer all e-mails immediately. This is due to the facts that my family is quite large and that I also need time to collect further information about the MASA (CRASH) syndrome.
But as long as my PC doesn't develop another kind of the "CRASH syndrome" I am going to do my best!
Jens:
Jens is our oldest son and one of those who always help me with all these
Internet things. I am very grateful for this as otherwise these pages would
not exist. As you can guess Jens is interested in everything around computers.
Moreover he cooks for us.
René:
René loves reading, likes everything around computers as well and helps with the household.
Sometimes he looks after Andy.
Gerald:
My husband Gerald appeciates my creation of this pages a lot. And he
has never said a bad word about me being carrier of the disease gene (not even when to know it). I
appreciate him giving me lots of good tips and thank him for his support with Andy.
Tim:
Tim's hobby is mainly music and sports. He studies social works and has lots of friends.
Corinn:
Corinn loves singing, music and her new little family. Since December 2004 she is happy mom of Chris (no MASA Sydrome).
Wesley:
Wesley loves playing with building toys, creating cars, robots, space
ships and boats. Moreover, he loves reading books about outer space.
Andy:
Andy loves listening to music, playing cars and Lego and to play and paint with the PC.
He laughs a lot and has lot of humour.
Feli:
Feli loves go to kindergarten and keeps bringing us pictures in beautiful colours. She, too, loves singing and is keen on "Laura's Star".
Ronja:
In August 2004 we "adopted" a two-and-a-quarter-year-old dog, a Jack Russell lady. She has become a good friend of all of us and we hope that she is going to be a good "therapist" for Andy whom he can tell everything we do not understand.