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Re: help in project needed |
Hi Patie,
Not sure what info you require on SMA, I have a two year old son who was diagnosed just over a year ago with sma II. The last year has been a rollercoster, and not just with coming to terms with the condition but with fighting for your rights and entitlements all the time. If you think I could help with your studies, please let me know |
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Re: Re: help in project needed |
| hello, i`m looking for informations about your life, how did ou lived before and how does it look now. i don`t have exact questions, just would like to hear your story. if ou are willing to tell me this - let me know. patie |
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Re: help in project needed |
| Rollercoaster is the correct word. When my daughter was born, I felt like all my dreams had come true as I had gone through 2 miscarriages and then I had a beautiful baby girl, a loving relationship and a bright future. I loved the first year of her life and took time out of my career to make the most of her. Then when she was 12 mths old, I noticed she wasn't weight bearing like her little friends. Several tests later, I was told she had SMA 2. I can't get my head around it. She is 21 months old now. Instead of toddling, she has a wheelchair parked in our living room. We have been living with SMA for 6 months now and it doesn't seem real. I worry that she will put on weight and not be able to exercise to lose it. I worry she won't be able to do things like get into shops or go to playgroups because there are stairs, and I worry about the time she is too heavy for me to carry around. I'm looking forward to going to the SMA Conference in July and this site helps me to see there can be a future. Before SMA I thought I was so lucky to have her. Post SMA , I still believe that. |
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Re: Re: help in project needed |
| thank you jojo. i know what you mean... i`m an adult with sma, but when i was younger it was really bad time. i guess we all need time to accept it... |
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Re: help in project needed |
Hello Patie;
I am Elizabeth's grand-mother and she is 4 years old and 7 months . She has Type 1 SMA. I wrote an article in The Jennifer Trust Inspirations that was published in a few months ago. Its was called "Lizzy's Story". I am from the US. Her web-site info is also in the article. I try to help as many people that I can world wide with what I have learned about SMA.
Please feel free to contact me. |
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Re: Re: help in project needed |
| hello, thanks for reply and yes, i`d love to read your story. could you please sent me site address? i`m not long in jtsma and didn`t get this inspirations edition where it was. so please send me the link here or send me email lilcia2001@yahoo.co.uk . i`m also on a smasupport discussion list. patie |
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