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Strength in numbers, the more we shout the more we achieve. Doing this for my little man Archie.

Profile Information

About me:
I am a single parent to the most wonderful, gregarious, beautiful boy Archie. O.K I know I bias :) I am self employed, after being with a company that had quite a sh***y attitude to my son's diagnosis and that was after 15 years of working with them !!! Anyway things are good, I choose when to work and I don't have to ask anyone for time off for appointments.
We live in a lovely part of South West London, loads of green area and a 3 minute walk from the river. I'm really looking forward to sharing my opinions, experiences and most importantly leaning on others that actually know what it is like.
Name(s) of child(ren)/individual(s) with Duchenne:
Age(s) of child(ren)/individual(s) with Duchenne:

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Comment Wall (11 comments)

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At 5:52pm on May 28, 2009, Susan Rathfelder said…
Hi, I read your post about not being able to find out your son's mutation or deletion. We are in the same situation. My son is 18 and has had 3 DNA tests and they have not found anything yet. Since I have no family history of this in my family I don't know if we will ever know. The genetic counselor I spoke with at Duchenne Connect and our Neuro say that there is a possibility that we may never find out. Our neuro and the genetic counselor are in touch and looking at the available options and at this point what our insurance will cover. We will see. I have two daughters who are aware of the possibility of their being carriers and a sister who has factored that into her decision not to have any children. It is hard.

At 5:54pm on May 6, 2009, Christine Stalling said…
Hello. Thanks for saying hi, finding this community has brought me some relief. I am already setting up appointments for my son to go to Dr. Wong in Cincinnati because of this community. This is the best information I have been able to find. Your pictures are lovely and how wonderful you were able to find a way to work at home. I am sorry your company was not supportive. I will look forward to visiting with you. I was in London a year ago January, it was my first trip there. I enjoyed it very much.
At 10:41am on January 23, 2009, Holly Cahoon said…
Your son is so cute!. My son is now 12 in a couple of months so if you ever have any questions please feel free to ask.
At 7:32am on January 22, 2009, Jane said…
Hello Johanna - i would definitely recommend the site to your mum. I have been very busy lately with one thing or another and I myself haven't had much opportunity to read through the pages or talk to anybody! Hopefully after next week i'll have more time, and perhaps soon will be chatting to your family!! Love to Archie, take care, Jane
At 2:06pm on January 12, 2009, Tanya Fleming said…
Johanna Thank you for your comment on my page. Your little guy is a cutie pie.
At 2:58pm on January 9, 2009, Emma Jerred said…
Hey Jo. I love this piccie of Archie...he just looks so scrummy. Hope you both ok. xxx
At 8:44pm on January 8, 2009, Carol Keskeny said…
What a doll?!!!! Great picture of Johanna. I plan to write you more because I need to finish dinner but I wanted to let you know you truly do have a friend. I will help answer any questions or concerns. I feel so lucky Daniel has made it to 22 and living in an independent apartment setting. I promise to write more soon. Please email any questions or comments. Fondly, Carol
At 11:31am on January 8, 2009, Sharyn Thompson said…
Hi Johanna,

We're actually in Beckenham, Kent, about 10 minutes west of Bromley. Nice suburb and close to London, which I love since we're only here for 2 years or so. We have a lovely big house with a huge backyard (well, huge by singapore and Tokyo standards) and just recently bought a chocolate labrador puppy! We have been promising the kids a puppy for a few years, and finally decided the time was right.
At 3:00pm on January 7, 2009, Sharyn Thompson said…
Hey Johanna,

Archie is such a cutie!! Where in London are you?

At 3:15am on January 7, 2009, Emma Jerred said…
Hiya Jo and Archie :o))) Hope you both ok. "Chat" soon. Lots of love Emma and Sam xxx

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