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SMA 1 diagnosis |
| Our 20 year old daughter has just been told that our beautiful grandaughter has sma type one and to not hold out to much hope for a lot longer, that she may not see her first birthday We are living a death sentence. She is now 6 months old and just been diagnosed. We are trying our best as a family to cope, but at the momemt we are grieving for a child that has not left us. Her arms and legs are showing lots of signs of movement and she is eating so well. Is there a miracle out there that is not the norm. We are trying desperatly to stimulate and make things good for our liitle angel. When the illness starts to kick in how long have we got her at home? Is it possible to keep her in an enviroment of love. Is there anyone who has experienced this that could help my 20 year old baby just feel a little hope for her baby |
| Posted: Sun Mar 16, 2003 4:07 am |
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Re: SMA 1 diagnosis |
Hi Nana. If you haven't already, then I'd suggest giving the JT a ring - you won't believe how caring and supportive they are.
Every case of SMA is different, and sometimes a type 1 diagnosis is changed to type 2 later. It wasn't so for us, but I can tell you that our little girl was always the happiest little spark there was. We always cared for her at home, with the odd few days in hospital here and there.
I know how numb you must all be feeling and our hearts go out to you. The JT will put you in touch with families who have been through this experience, and we found this help to be the best of all. |
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Re: SMA 1 diagnosis |
Hi Nana, I want to reflect what Gareth has said and hope that you have been able to get in touch with JTSMA. Our beautiful son had SMA type one and we cared for him at home throghout. One of the great gifts we and our friends could give him was unconditionl love and warmth and boy did he give it us back!
Give our warm wishes to your daughter and her beautiful daughter.
Emma |
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Re: SMA 1 diagnosis |
Hi Nana
I have just read your letter about your 6 month old grandaughter. We went through a similar experience last year when our nephew was diagnosed with Sma 1. Not only was this extremely upsetting for the family but even more so for the parents, as they had waited 20 years to have their son, and couldn't believe that this awful blow had been dealt them. After the initial shock and feeling extremely sorry for ourselves we all decided that we had to make the most of the time that little one was going to be with us all. My husband is one of 4 children and it was his closest sister whose baby it was. It brought the family so much closer together and we all spent so much time with the little one and tried to give mum and dad as much support as we possibly could. I think what I am trying to say is enjoy your little angel as much as you can whilst she is here, also whilst she is relatively well, e#njoy that also. Try to organise now the things that she may need when the illness kicks in more. One thing that I know my sister in law found extremely helpful when little one couldn't sit very well, was a little bean chair,as he could sit in it and watch what was going on, but a t the same time be comfortable as he felt supported. The other thing was a bubble tube, we found one that had balls and bubbles in it that also changed colour. He loved it, wouldn't go to sleep! Do try to keep stimulating little one, she still needs that, our nephew used to love to be spoken to and sung to. Just like any other baby. I can't say there is a miracle cure for your little angel, but try to keep smiling whilst she is with you. We all did and are so glad that we did we have some wonderful memories and photos and video, take lots of photos and video, you will really appreciate it in the future. Also ask questions of the medical people, challenge what they are saying, parents know their children better than anyone. I hope that this will help in some small way. Please feel free to email me if you want to chat, also as a family talk to each other about how you are feeling, you may have so little time with little one and you don't want to waste it by not communicating.
Wishing you all the very best
Denise Jeffery |
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Re: SMA 1 diagnosis |
Hi, I know that you may not see this reply as you typed yours a long time ago but reading it made me want to reply to you.
When I was 19 yers old my beautiful daughter Emma Louise was diagnosed with SMA type 1. In those days there was little knowledge and no treatment options at all. I loved her and nursed her until she sadly died 4 days before her first birthday.
All I can tell you is that it was the sadest day of my life to lose her and 26 years later I still miss her and love her. However she was so beautiful and made everyone who met her smile with her big blue eyes that twinkled. I remain sad to heve lose her but privilidged to have been lucky to have been her Mother and would not have changed the experience as I may not have had the privilidge of knowing her.
Your 20 year old baby is lucky as I was to have her own Mum who loves her and will help her through this experience. Having my own grown up children now and Grandchildren I now realise just hoe hard this must have been for my own Mum at the time, she was not only losing her baby Granddaughter who she adored but was watching her own baby having to deal with the pain of losing her daughter. My instinct tells me that you are and will continue to help your daughter just by being there and being 'you'.
Take care and please email me if you would lie to talk.
Laurie Brown. Coventry.
(Webmaster - please contact me using the link at the bottom of the page for Laurie's email address) |
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Re: SMA 1 diagnosis |
| Hi i have experienced the same thing that you are going through my nepthew got diagnosed with sma type 1 last november it would of been his 1st birthday on saturday but from what you said about your grandaughter showing signs of movement and eating really well it shows that she is strong our lewis was totally oppisite he hardly ate anything and he did was smile tell your daughter to be strong and just hope for the best |
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| Thu Jun 10, 2004 10:07 am |
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