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My wheelchair and I

Few words about...

I introduced myself before, but now I would like to tell all of you something about my disability and my new friends from all over the world.
 
All that illness I`ve got is called SMA, spinal muscular atrophy. I`ve got type II.
It has started when I was 18 months or so. First moment nobody knows what it is, some doctors said that it is SMA I, but it wasn`t that for my luck.
They diagnosed me for sure when I was 9. From that time I`m getting weaker and weaker every year. Besides SMA, I`ve also have arythmia, reflux and anemia caused by too small level of ferrum.
 
Few weeks ago I discovered two great sites:
FSMA families
and SMA friends on yahoo groups
 
there is also one more good group. the owner wants to create data base of people with SMA who can exchange houses for holidays.
 
I`ve already have new friends with SMA. Before that I haven`t known anybody with SMA... Now I can feel that I`m not alone with it.
 
05.08.03
and one more site:
 
18.11.03
this is site of polish group of people who has ms, sma or md. i hope you`ll find something interesting here.

below i`m pasting info about my friend`s helen baldwin new version of book about her son, who died of SMA. read and contact helen with any questions!


The Jeffrey Journey - I am also beginning to work on the second revision of The Jeffrey ourney (based on notes from our Jeffrey days) and am once again asking for help in getting the word out for the special dedication and resource section. Very briefly, one section of the special dedication honors those with SMA and another serves as a memorial; I haven't had time to count lately, but there are hundreds of names in each section. As this will hopefully help spread awareness of SMA and serve as a fundraiser, I would love to list as many names as possible - not only simply to include everyone in the SMA family, but for the greatest 'power-in-numbers' impact. If you are interested, all I need is the name as you would like it listed, along with a nickname if desired, and whether it belongs in the 'honor' or 'memorial' section. No other information is included in the dedication. I am not listing full names without permission, although there is a third section - first names or initials only - for those I have been unable to reach. If you have any doubt as to whether or not you have sub itted a name (or names), PLEASE let me know, and I'll check! There is no limit of any kind - age, location, etc. - so please share this with any other SMA families you may keep in touch with. Also let me know if there should be a change of any kind, such as a name change or a move from the honor section to the memorial. I have tried to keep up with new angels but may certainly have missed something somewhere. Regarding the resource section, if you have found a particularly useful site (primarily SMA-specific, general special needs, or a site/business owned by someone with SMA), I'd like to consider it for the resource section. The book is slowly branching out into the non-SMA world of disabilities, so the resources do not need to benefit only those with SMA. There is no official deadline yet, but I would love to have names and resources by September 5 if possible. For those you know who might not have internet access, my address is listed below.

If y u would like a copy of the book for a fundraiser or are interested in purchasing the book (which is accompanied by a CD of the music my mother wrote for Jeffrey), you may either e-mail me for details or go to http://balderdashe.com (secure site).

Thank you!!!
Helen (Baldwin)
P.O. Box 964
Jefferson, NC 28640
http://www.trafford.com/robots/03-0953.html or http://balderdashe.com