Re: Subject: Re: pacemaking-DARLA/Anne

[Guest guest]

Hi Anne:

coming in on the tailend of this...I love to have a copy of your presentation. Your point is so well taken. For Max we do have medical emergency instructions and at the local community hospital they have a special file in the ER for special needs kids in the area. The original resides there.

We have included a lot of things and I always wonder whether we missed something. Your presentation may definately help with that.

Thank You

rosy

[Guest guest]

Anne,

I would really love a copy of your presentation!

Anne R (Asher's mom)

If you live in Wisconsin, the ironic thing is that I

had just started planning a 1/2 day conference about this and other

emergency preparedness issues for children with special needs (natural

disasters, etc.). Unfortunately, I am now speaking because I am in a

position of knowing about these issues which are often fraught with

local politics and funding. The red cross, another parent and a child

alert representative will also be giving presentations.

The conference is May 14 (Saturday) from 8:45 to noon I think. It is

at a conference center 1/2 mile from Children's Hospital right off of

45 and Watertown plank road. It is $5 and I think that is refundable if

you show up. You can call for more information, to request

a brochure or to register.

If anyone not living in WI is interested, let me know and as I develop

my talk which will include Sam's encounter with the paramedics and

community hospital and create a " to do " list for parents in order to be

prepared, I will send that to you by email.

However, to answer your question Darla -we don't know the specific

cause of the bradycardia. It did seem that in the last 12 months he was

getting more and more tired and sometimes his little body seemed to

need more and more help to compensate. I refer to mito as a disease

that literally starves our children for energy.

Anne

Please contact mito-owner with any problems or

questions.

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