Noonan Syndrome (NS)
Support Group Introductions

Hammer, Gry (as of 12/98)

Hello!

I must admit I have followed this communication for some time now. I am quite impressed with the "temperature" on his list, and have got information about Noonan syndrome I had no idea about. What strikes me the most is the diversity in symptoms of NS. I have a son, Patrick, who is diagnosed with NS, and I can’t always relate to the topics coming up in this group. For example is Patrick of average height. He is now very close to nine years old, and is in some cases taller than his age group fellows. We are however quite tall in my family, and my other son (Patrick is the only one in our family with NS) Christopher is 14 and 190cm, which means that Patrick probably was supposed to be as tall as his brother had everything been "normal". Now he reaches, as I said, average height. Apart from that Patrick has had his share of for example heart problems an eating disorders. I can still remember vividly my attempts to make him eat as a baby, singing all the songs I could remember. That used to startle him to the point that he ate without crying.. The problem came, of course, when most of it came up the same way.

Today, Patrick enjoys eating. He is very fund of all kind of, in his world, tasty food, and chocolate, cakes (passionately ;-). He is very sociable, although "jumpy" and dependent of being "ahead" of events and things he is supposed to do or events to attend. I must say that all has become easier by the years passing by. Additionally, Patrick has had great support and training both form kindergarten an now his school. He attends a school with special training resources, he is fully integrated in his class (although he is one year older than his classmates, by choice. We found it better to wait one year and spend more time and training in kindergarten. It has proven very valuable in many aspects. Absolutely recommendable.) , but attends separate classes to add to the items he struggles with.

Patrick has his own home site on the web (it needs updating now, I know..), it is listed in Noonan web-ring administered by Wanda(?). I am also working on (but time..time..) a home site for Noonan Norway, a more official site for Noonan syndrome in Norway. I hope to complete the last mentioned soon.

About myself I can tell that I am 37 years old, I am a teacher with special education as one of my major topics, I have three children; Lisa 17, Christopher 14 and Patrick. I am divorced. I did not know much about either Noonan syndrome or any other syndrome before Patrick, in this aspect I have learned to see life differently than before I had him. I am currently employed at National Center of Educational Resources, it is a departmental office taking care of Norwegian governmental schools, regarding books, web etc. My job here relates to an Online In-service ITC Centre on the web, offering practical, technical and didactive advice for teachers related to several topics. My job also includes projects related to electronic learning programs.

Well, now I have "taken the step" into your group, thanks for reminding me, Wanda.

I could probably keep on talking about Patrick till I dropped, but I’ll try to restrain myself.. ;-) What I would like to express, however, is that all though there has been all kind of pains and despair, both for Patrick and for the rest of the family, if I could have chosen at some point I would still have him. At least I like to think that I would. He has enriched my life. No doubt about it. He still struggles with being sick from for example pneumonia from time to time, but his health has stabilised over the years. Now I can work full time, that would have been impossible in his earlier years. In Norway you have the right to stay at home with sick children (up to 12) for, if single parent, 20 days a year. I have not had to extend that limit so far this year. I have spent a lot of time studying diets, I fully believe wrong diets combined with poison like antibiotics can increase sickness and ruin a healthy immune defence.

My greatest worry today is the quality of his future, of course. All is better with a child than an adult in topics like support in life, education etc. I am sure that many of you also have, somewhere in the back of your head, the thought of when you are no longer around, then who...?

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