Re: Re: cooling vests? (Anne)

[Guest guest]

Thanks for the info. This is concerning me, though. We have been waiting since July of last year for Gracies, and we are NOT on the waiting list as MDA paid for hers. They did supply her with an older version type, but have promised us a custom made one. I've actually even been in very close contact with Ginger and the seamstress, as they are using us for references on design ect... UGH! Maybe I've been too understanding. First it was because they told me the Heat relief depot no longer made custom vests, now finding out that is not true. Now they told me that they are working on getting them out and she is on top of the list. I still think very highly of them, but we just cannot let Grace suffer ANOTHER heat stroke. Hopefully it arrives soon.

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[Guest guest]

,

That is very strange. We are on the " free " list as we haven't yet gone

through the MDA - will be doing that next fall as we pursue a

wheelchair (he's getting too big for the stroller). I'd call Ginger and

Kim directly. They told me that the seamstress is a local seamstress

NOT one that's through a company .... I hope we really are getting one

and that it really is in the mail!

Anne R

Re: Re: cooling vests? (Anne)

Thanks for the info. This is concerning me, though. We have been

waiting since July of last year for Gracies, and we are NOT on the

waiting list as MDA paid for hers. They did supply her with an older

version type, but have promised us a custom made one. I've actually

even been in very close contact with Ginger and the seamstress, as they

are using us for references on design ect... UGH! Maybe I've been too

understanding. First it was because they told me the Heat relief depot

no longer made custom vests, now finding out that is not true. Now they

told me that they are working on getting them out and she is on top of

the list. I still think very highly of them, but we just cannot let

Grace suffer ANOTHER heat stroke. Hopefully it arrives soon.

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[Guest guest]

Yes it is true, that she is a local seemstress. In fact she has a grandson with photosensitivity and has been involved with the foundation for quite awhile. They too promised her vest soon. I guess it is mostly my fault, as I told them to make the warmer climates vests before Gracies. We live in Ohio, so it is not quite as urgent yet. (My kids actually had a snow day today!!!) I'll call Ginger, if it takes more that a few more weeks. Thanks again

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