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Tue Dec 23, 2008 6:34 am |
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Merry christmas to all involved in this site, i would just like to thank you for your fantastic support in 2008.
Long may it continue.
Dean, Wats, Anu |
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Thu Nov 27, 2008 5:09 pm |
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A fourth year Medical Student is currently working on a project that involves producing a teaching resource, and has chosen to produce something that is aimed at teaching children aged nine to twelve about Spinal Muscular Atrophy. The student's current proposal is to produce a leaflet that will be designed to be read by the child with the intention of providing both factual information and a way of facilitating discussions and providing answers to questions the child may have. I would be very grateful if you could spend a few minutes filling in this simple questionnaire to help the student to establish the sort of information that should be placed in the leaflet/booklet.
1. Do you think such a leaflet/booklet would be useful in providing information or facilitating discussion with your child? Yes / No
If no, please state why: _______________________________________________________________________
2. As the parents of the child, what information do you feel is relevant for them to know that could be placed in a leaflet for them to read about?
Some examples:
- What has caused the condition (ie. The genetics)
- Why they get the symptoms (ie. The process behind the condition)
- Why the treatment options are limited at the moment
3. Are there any questions your child has had that you feel could be added and discussed within the leaflet?
4. This leaflet, or an additional leaflet could be produced for the siblings of the child to read.
a) Would this be useful? And b) What information do you feel could be provided for the siblings?
Please return your replies to Hilary Adams hilary.adams@jtsma.org.uk and these will be forwarded to the medical student.
Thank you very much for your time. |
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Tue Oct 28, 2008 7:07 pm |
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| Mon Nov 10, 2008 3:58 pm |
| milly01 |
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I am in need of some advice/help here, i have a 27 month old baby girl who is affected by sma, i am also 34 weeks pregnant, i am looking for a twin puschair that would be suitable for both my two babies. i have had a look at a few but are really expensive something that i would struggle to pay for myself.
I was wondering if anybody out there has been in the same situation as me. i want to be able to take both my children out on my own without having my partner there to push the other pram, so i am thinking a double buggy is the only option. if you could give me your advise and views it would be much appriechiated
thanks
kyla |
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Mon Sep 29, 2008 2:07 pm |
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Hi, has any other child had to undergo a Bone Density test prior to trying a Levo stand up wheelchair? My son has tried a Balder (which was fab!) without any suggestion of the need for bone density confirmation, however his physio is asserting the need for this test before he can even try the Levo.
Many thanks, |
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Mon Sep 22, 2008 5:54 pm |
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| Tue Sep 23, 2008 4:54 pm |
| milly01 |
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| my son has many many aids none work. He has a neck brace he wont wear, a vest with inner tubes that ends up round his ears, a body vest no good and the only thing he likes is a swim aid he sits in however getting too big for it. Any suggestions please. We are aiming for an aid that holds him in the water with some independence i.e. we dont have to hold him to our chests all the time. thanks |
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Mon Aug 11, 2008 10:35 pm |
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| Wed Nov 5, 2008 10:34 am |
| Paul72 |
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| My gorgeous baby daughter was born on January 3rd 2008. On May 28th 2008 my world fell apart when we learnt our baby Georgia had SMA type 1. Anyone out there please advise me on how to live day to day not knowing what is going to happen. I also have a 3 1/2 year old who is very demanding. Georgia has deteriorated over the last few months dramatically and i'm so scared. |
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Mon Aug 11, 2008 0:37 am |
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| I have sma II and am from philadelphia although i go to college in northern california. i am very interested in studying overseas and am trying to find more information about how i would do that. my college has an exchange program with oxford and i am wondering if anyone knows how accessible the school is. please respond here or email me at juliahf5@stanford.edu. thanks! |
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Tue Jul 29, 2008 11:55 pm |
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| Wed Oct 15, 2008 5:43 pm |
| baz25 |
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| We are currently looking to replace our 7 year old daughter's powerchair and are interested in anyone's experiences of the reliability of the various models on the market . She needs a hieght adjustable chair and standing would be an advantage. Response times for call out's is also important. Any thoughts would be helpful. |
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Fri Jul 4, 2008 10:59 am |
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| Wed Jul 23, 2008 2:44 pm |
| RossT |
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| Hello im jazmine, i was wondering if there was anyone who could chat to me about S.M.A abit More? |
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Sun Jun 15, 2008 0:15 am |
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| Thu Jul 17, 2008 7:46 pm |
| Lou |
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Well what can I say, we have just got back from the mobility show and I have to say .... WOW! That was the best thing we have done since our daughter was diagnosed - there is so much equipment out there and so many different designs that you have to see it to believe it!
Now the dilemma is which powered wheelchair do we go for?!? Personally we like the Snapdragon as it goes right down to the floor and we think it might be good for her to be able to get in and out herself? but the Hippo looks good too!
- has anybody got any experience with either of these machines? Any advice would be great. |
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