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Listing Questions 1 to 10 of 26 |
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Thu Dec 18, 2008 5:46 pm |
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Greetings to all! I don't know if this is the best place for this, so I may post in another section of the forum as well.
My primary purpose for writing is to ask if anyone has any information on SMA and strokes. Angie Wright (SMA 2) suffered a stroke in April and has given me permission to post to see if there is anyone else with SMA who has shared this whammy of a predicament. You can read about the stroke in the last entry in her journal - http://www.nof49.ca/angie/basicbio.html. Needless to say, the doctors are in a double quandary here, and to say she's feeling discouraged is a gross understatement. If anyone has experience and/or information about SMA and strokes, please send a note to Angie - angie@nof49.ca. Notes of encouragement would be most welcomed, too, especially since her 44th birthday is Sunday, Dec. 21!
While I'm here, I'd like to remind folks to submit a name for the special dedication in The Jeffrey Journey (for more info about the book, don't hesitate to ask!). I have received permission for over 1000 names in the next revision; this will help raise awareness that SMA is not quite as rare as most of us were led to believe, but it is just a small representation of this incredible family. If you have not yet submitted a name, please consider doing so. All I need is the name as you would like it listed, including a nickname if desired, and whether it belongs in the 'honor' (living) or memorial section. If you have some sort of network with other SMA families, please share this, as no matter how hard I try, I will never be able to reach everyone myself! There are no restrictions, such as number of names submitted, dates, ages, location, and don't forget to submit your own name if applicable! Thanks so much.
Finally, I periodically email an update of SMA news, announcements, projects, helpful sites, etc., that might not reach folks otherwise. There is always so much going on! If you would like to be added to the list, just send your email address.
Happy, safe holidays and a terrific, healthy new year to all -
Helen
jeffreyb@skybest.com |
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Fri Sep 26, 2008 3:48 am |
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| HOPE I'M NOT BEING NAIEVE BUT ANY SUGGESTIONS FOR A JOB AFTER WORKING IN THE BUILDING INDUSTRY FOR TEN YEARS WITHOUT KNOWING I HAD SMA TYPE 3. SHOULD HAVE KNOWN YEARS AGO WHEN I WAS STRUGGLING WITH HEAVY LIFTING |
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Wed Jun 18, 2008 1:05 am |
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| Tue Jul 15, 2008 11:29 am |
| amanda |
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I'm once again/still looking for names for the special dedication of The Jeffrey Journey, a book about our brief time with our baby, Jeffrey (whose 11th birthday we celebrated last month!). One section of the dedication honors those with SMA, while another serves as a memorial.
There are now over 1000 dedication names ready for the next printing, which will hopefully be the latter part of this year or the early part of 2009. It is mindboggling to read so many names in one place and to realize there are so many MORE.
There are no restrictions for submissions!!! Names have come from all over the world and include all ages and dates. Some families have had several names to submit.
If you would like to submit an entry to the dedication, all I need is the name as you would like it listed, along with a nickname if desired, and whether it belongs in the memorial or honor section.
Once a name is included in the dedication, it's there for future revisions. If you are unsure as to whether or not you have already done this (or if a name needs to be moved to the memorial or changed otherwise), please don't hesitate to ask! It's easy to check, and some who assumed they had already submitted a name learned they hadn't. Also, be sure to check if you've had another child diagnosed within the past few years.
For more info about the dedication, book, or CD of original lullabies that accompanies the book, or to inquire about ordering, feel free to email me. You can read a little more about the book and listen to a few snippets of the CD at http://balderdashe.com/the-jeffrey-journey/index.html.
Thanks again to all who have contributed to this ongoing 'community' project and for sharing this with other SMA families you know!
Also, I have been trying to put my address book back together after its maddening disappearing act and finally got it together enough to send out an SMA 'stuff' update two weeks ago. If you usually receive one but didn't (and would like to), please let me know so I can send it and add you back to the list. Likewise, contact me if you've never received one but would like to begin (please share this, too!). Someone suggested a blog to replace the updates, and as soon as my fellow SMA mom/partner in crime and I can figure out what we're doing and when, that's one thing we're aiming for in our upcoming venture. 'They' say we need to learn new things in old age to keep our brains alert. My brain snickers at any project that even hints of dabbling in technology, but I AM an optimist :)
Happy, healthy summer to all - Helen (jeffreyb@skybest.com) |
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Mon May 5, 2008 10:59 pm |
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| Mon Nov 24, 2008 11:23 pm |
| sally |
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Hi
I would like to meet or talk to another mum in Oxfordshire or surrounding counties. I have a daughter aged 21 months with SMA2.
I'm feeling isolated and need to chat with someone who has the same worries as me. |
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Sat Mar 29, 2008 5:45 pm |
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| Thu Apr 3, 2008 10:10 pm |
| Heather Tingey |
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Im not sure if this is the right place for this question, but I wasnt sure where else to put it.
Our little Rosie died in October 2005, and I then had a miscarriage in December 2006, we have been trying to get pregnant naturally, but since the miscarriage its just not happening.
I am overweight by too much and feel that maybe a big part of the non conception, so I have started go swimming twice a week, as well as eating better.
But myself and my husband, Peter, have been discussing it for a year on and off, and have decided to look into Adoption.
I have sent off for information packs and we have gone through them, and have pretty much decided to pursue it.
We would love very much to give Rosie a brother or sister, and really cannot see our lives without children around us.
I just wondered if anyone else has decided to look into adoption or has adopted a child. |
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Tue Mar 25, 2008 9:29 pm |
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| Mon Mar 31, 2008 8:52 pm |
| Heather Tingey |
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| Just wanted to say hi to people reading this.its just first time i have wrote anything, but have been reading my way through all the helpful info in the discussion topics for the past five months (since diagnosis)whilst caring for my little one who will be ten months next week but is just starting to struggle with sma now and showing signs of respiratiory failure. was preparing for the worst all of last week, but now the medication has settled him so well,so he can play again and laugh,and watch his favourite cartoons comfortably again and not worry about his breathing for a bit.its just lovely to see him content again! with sma,we just take each day by day, sometimes hr by hr, and the un known is quite scary,and can feel so isolated, but they are so special and you cant give up hope when you are blessed with such miracle children can you?x |
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Wed Nov 14, 2007 2:53 pm |
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I am begining the planning of Conference 2008 and I would like to ask our Type 1 families for their suggestions as to what topics / seminars or workshops they would like to see covered through the weekend. If you have some ideas please send me a private email at christopher.reed@jtsma.org.uk or call me on 01789 267520.
I look forward to hearing from you. Chris |
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Fri Jul 6, 2007 2:34 pm |
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| Is there anybody else who has a child affected by SMA with agenesis of the corpus callosum with or without associated blindness? please contact if you have any experience/comments |
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Tue May 15, 2007 11:16 pm |
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| Thu May 31, 2007 5:00 pm |
| milly01 |
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I miss my son so much and we like to mark the special days we have for him by letting ballons go. This is part of our little ritual and has been for the five years since he left us. More recently and with the Green debate in mind, we have been looking for other ways to send our love to him although I must confess that we have been a bit slow in loosing the balloon thing completely yet!.
Thinking about these things has also made me wonder if there is another way for us to mark the occasion of the memorial service at conference other than by the letting off of balloons?
I also wondered what the news was on the woodland that was so kindly donated to JTSMA. Apologies if I should know the answer to this one. I think I remember Anita saying it was in Kent? |
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Mon Apr 30, 2007 11:46 pm |
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| Sun Apr 20, 2008 6:21 pm |
| jo |
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| i never belived in god but when i lost my great nephew to sma at 4 months i thought there must be something wrong he was are life and it will never be the same again miss u my babby |
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