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Re: contact in oxfordshire |
| You have just brought a tear to my eye the thought of anyone feeling isolated due to this makes me sad. my name is Jo and i'm from northampton my son had SMA1, so dont really know if i can help but i can listen if you you want and understand some of what your going through. I'm due to bring my older son to oxford to helen house, do you know it? if yo want to meet for tea and a chat just reply and we will go from there and if not then i wont be upset. hope to hear from you love jo x |
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| Tue May 20, 2008 10:01 pm |
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Re: contact in oxfordshire |
Hi JoJo,
I'm really sorry to hear about your feelings of isolation and worries regarding your daughter. I have a daughter with SMA2 who turned 3 at the beginning of this year and I know exactly how worrying it can be - she was diagnosed a year ago and even though I still don't fully understand the impact this will have on her future we are trying to take each day as it comes to the best of our ability.
I moved away from Oxford about 7 years ago to Derby but I do visit my family regularly through out the year so if you ever do want a chat or just have someone to vent to then I am more than happy to make arrangments to meet yoou and your daughter. |
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Re: contact in oxfordshire |
Hi, I know you posted this back in May but I thought I'd post this and see how you are? I live in Southampton, I am age 28 and I have SMA type 2, after 101 chats with my Mum over the years I know she felt the same way when I was born. My mum would say to me, "it's funny Emma because when I found out, no matter how many friend or family would come and visit, I still felt a big black whole inside and nothing could shift it!" The doctoer's told my mum I had SMA when I was 18months. Mum took my to the doc's because I wasn't getting about and she thought it was a bit strang. I like to contact parents like yourrself because I know how overwhelming all the info and fact's you are given can be. I live inderpendently with carer's and last year I had a baby of my own which is fantastic. My little girl has NOT got SMA but is a carrier. I hope by me contacting you and letting you know that I've had a baby of my own, will give you some hope for the future. If you would like to contact me my name is Emma Sheldon and if you ring the jennifer trust they will put you in contact with me.
All the best Emma |
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Re: contact in oxfordshire |
Hi I know you posted this a while ago but just wondered if you were still looking for someone to chat to I live in Oxfordshire and have a baby girl who is 6 months and just been diagnosed with SMA the doctor we are seeing is unsure if she has type 1 or 2 we need to see if she sits up.
Much like yourself I feel very alone as I just dont feel people understand its not something you can talk to your neigbough about. |
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| Mon Nov 24, 2008 11:23 pm |
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