I live with my family in Lynnwood, WA. I teach part-time ESL in a Mukilteo middle school.
Our 6-year old son Colin was diagnosed with DMD in August 2009. He has a deletion of exon 7.
About my family:
My husband works for Starbucks and I teach 5 hours per day.
Our 9-year old daughter Bailey will be a 4th grader this year.
Colin will be starting first grade this year! We like the outdoors- camping, fishing, love to travel, love the UW Huskies!
Name(s) of child(ren)/individual(s) with Duchenne:
Okay, I just saw the weather.... Is there a back up plan if it is raining? I live close we can go to my home or yours. Anything you want. We have a two story house and the bathroom is upstairs. I know, it is not a good home for Jacob and we are looking to buy a new home very soon, but I thought you should know.
I live in South Everett near the mall. I thought of a great place.... I will meet you and Colin at 1:00 pm this Sunday at Silver Lake park. They have swings and stuff. Hope to see you there.
Does Colin take Idebenone? Where do you get it and how much does he get if you do? I have been ready these post and I think I am behind in his treatment.... Has Colin shown sign of muscle challages or is he improving and maintaining?
I told Jacob about Colin and he was really excited about making a new friend. Do you have an hour sometime on Sunday to meet us at a park so the boys can swing together?
Sure, I can meet you for lunch. I can take it at anytime. I would have to be around the 128th street area though. Let me know what sounds good for your schedule.
Can you go to my company's website www.streamkeeper.org and go to classes? We are having a presentation by Jeff Guidry and his Eagle named Freedom. Has Colin or your family ever seen a bald eagle 5 feet away from them? You are more then welcome. I will be working but my family will be there. Freedom loves the flash of a camera. Anyway it is this Saturday at 11 a.m.... Admission for the four of you will already be paid for (I work here). Anyway hope to see you Saturday.
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Jeni,
Does Colin take Idebenone? Where do you get it and how much does he get if you do? I have been ready these post and I think I am behind in his treatment.... Has Colin shown sign of muscle challages or is he improving and maintaining?
Jeni ~
Can you go to my company's website www.streamkeeper.org and go to classes? We are having a presentation by Jeff Guidry and his Eagle named Freedom. Has Colin or your family ever seen a bald eagle 5 feet away from them? You are more then welcome. I will be working but my family will be there. Freedom loves the flash of a camera. Anyway it is this Saturday at 11 a.m.... Admission for the four of you will already be paid for (I work here). Anyway hope to see you Saturday.
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