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Re: is it possible with sma 1 to live a lng time ? |
Hi Teri,
SMA is usually diagnosed by a blood test which is very accurate, this tells if the child has SMA, however which type of SMA is only diagnosed by the doctors individual perception on the day. This can be very difficult especioaslly when a child is 'borderline' - this means not clearly with a specific type of SMA, so a borderline typeI, typeII child could fall either side of the diagnosis. Somettimes a child may be diagnosed with typeI SMA, later to be re catergorised as bordeline or typeII.
Here at the Jennifer Trust we are in touch with many families with children with SMA, some of who will share similar experiences to you. I am uncertain where you live - if you are based in the UK it may well be possible to put you in touch with another fammily with similiar experiences - perhaps you would like to discuss this with our contact network coordinator, Rachel in the office. I hope this is useful, please let us know if we can be of any further help.
Tim |
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Re: is it possible with sma 1 to live a lng time ? |
Hi my son is now 2 and a half. He was diagnosed with having type one february last year. I also found that all that is ritten about type one is that they die. My son has got a curved spine and has just been fitted for a jacket. He can't walk, he is able to sit and reach for things though. He can make himself fall over but cant get up.
I went up to Guy's hospital just before christmas though and spoke to Dr Stephanie Rob there and she told me that in fact my son is type 2 and not type 1, are you sure its not the same with your grandson? She told me that type one sma babies never learn to sit.
Anyway just to let you know that there are other children out there that have been told they are sma 1 and do live a long time. |
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| Thu Jan 23, 2003 10:59 am |
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Re: Re: is it possible with sma 1 to live a lng time ? |
| I TALKED TO MY DAUGHTER COUPLE OF NIGHTS AGO AND I WAS WRONG STEVEN HAS TYPE 2 ALSO. HE IS ABLE TO SIT UP WITH SUPPORT AND CAN USE HIS HANDS. IF HE FALLS OVER HE ALSO NEEDS HELP GETTING UP. HIS FAVORITE THING TO DO IS BE ON THE COMPUTER, HE'S A WHIZZ WITH ALL KINDS OF GAMES ECT. STEVEN SPINE IS ALSO CURVING BUT BECAUSE HE'S GROWING THE DR. WANT TO WAIT TO PUT A STEEL ROD IN HIS SPINE. IT SOUNDS TERRIBLE BUT I CHECKED ON IT AND ITS SUPPOSE TO WORK WELL. THANK YOU FOR YOUR EMAIL IF YOU WANT TO TALK PLEASE EMAIL ME AGAIN. TERI |
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Re: Re: Re: is it possible with sma 1 to live a lng time ? |
| Dear Teri. I have SMA Type 2 and am 21. I'm nearly coming to the end of my university degree. I was diagnosed about the same time as your grandson (about 1 yr) and when I was 11 had a spinal operation (the rods). It was extremely succesful and am so happy it's improved my quality of life. My brother (who has SMA too) also had surgery. Take Care, Toby |
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Re: Re: is it possible with sma 1 to live a lng time ? |
| hi my nepthew got diagnosed with sma type 1 last november and it would of been his 1st birthday on saturday but sadly he died in febuary this year when they say that 80% die before there 1st birthday but that is just an estimate as long as the children try to fight it then there is always hope every child is different so they can never tell |
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| Thu Jun 10, 2004 10:02 am |
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