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Re: New interview update

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Terri,

So glad the interview went well! I am sure that your voice speaks for many of

our families here. My step-dad used to produce news for NBC and used to find

really cool pieces from other news carriers. Perhaps some of the bigger

networks, or other local news stations, can pick this up? Hmmm.... If your

guys are coming back, ask how this might be done. If they can give you copies

on DVD/CD we can also circulate them. More people need to know...

Dani;'s mom, CVID

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Guest guest

Terri,

So glad the interview went well! I am sure that your voice speaks for many of

our families here. My step-dad used to produce news for NBC and used to find

really cool pieces from other news carriers. Perhaps some of the bigger

networks, or other local news stations, can pick this up? Hmmm.... If your

guys are coming back, ask how this might be done. If they can give you copies

on DVD/CD we can also circulate them. More people need to know...

Dani;'s mom, CVID

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,

SOUNDS GREAT-congrats on your good fortune- I would be happy to be part of the

group to nominate Terri for a Home Extreme Makeover

Sue Petrelli mom to

osdbmom <osdbmom@...> wrote:

I have hesitated to share this, b/c of Terri's situation, but I'm

going to go ahead.

The wonderful, wonderful, people who are at Motts fundraising at U of

M called me last week. These are the folks who stunned us with the new

heating/cooling system(which is way, way awesome,especially with the

105 degree heat index!)

So the guy called me,and said he had a little something up his sleeve

extra for us.I couldnt imagine what that could be,and immediately

started to protest NO!! you have already done so much for us!!

So the guy says.......so I noticed that you like the color

burgundy(from when he was in our house). And I was all, um, yeah.

So he says, well, while you guys were downstairs, and I ran upstairs,

I measured your chair and couch, and looked around and noticed you

have a lot of burgundy colored knick knacks.

I still couldnt figure it out.

So he says, So, we all talked about it and decided to do this, and

anyway, we went ahead and bought your family a new burgundy leather

living couch and chair!!!!!!!! I was so stunned!!!This is all on our

list of things to do for dust allergies, etc, but we could not afford

it yet. Now, we can focus on the flooring. I feel so humbled and

overwhelmed and giggly. I have no idea what this looks like, or

anything, and I DONT CARE. I may never even let the children sit on it

LOL..

So I was reading this and thinking we should share the love. Lets have

our group email Extreme Makeover for Terri's family and see what

happens.Whaddya think?

Valarie

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Guest guest

way to go Terri- thanks for doing the interview and spreading the word about

PID,

Sue

Mom to 14 yr old w CVID

cerdaclan <tcerda@...> wrote:

Good Sunday Morning everyone,

I wanted to write and let everyone know how the interview went....it

was supposed to be 1 hour...it went on for 3 hours. They were so

blown away that they want to continue the interview. They left

saying that they felt that the time they gave to it was not enough

and that they want to make sure that this gets the attention that it

needs so that we see the results that we want to see from

it....namely recognition for PID and the needs for more appropriate

care from a multifaceted angle. It was very emotional...both my

husband and I were brought to tears.....they spent time with the

girls learning their tiny perspectives on the big picture....they

were shocked by the experiences that we have had. They left saying

that they would be coming back and interviewing us further so that

they could make sure and give the best effort to the story that they

could. We were happy with the interview...of course felt like we

had so many more things to say....but I do think it is going to make

some changes...especially here in Nevada....I think we will also

have other families coming out of the woodwork that we are unaware

of.

Thanks for everyones prayers....support ....good vibes.

Terri Cerda (mom, 46; Molly, 6 and Maggie 4....CVID)

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Guest guest

I definately think we should email Extreme

Makeover!!!!

--- Sue Petrelli <rsknp@...> wrote:

> ,

>

> SOUNDS GREAT-congrats on your good fortune- I

> would be happy to be part of the

> group to nominate Terri for a Home Extreme

> Makeover

> Sue Petrelli mom to

>

> osdbmom <osdbmom@...> wrote:

> I have hesitated to share this, b/c of

> Terri's situation, but I'm

> going to go ahead.

> The wonderful, wonderful, people who are at Motts

> fundraising at U of

> M called me last week. These are the folks who

> stunned us with the new

> heating/cooling system(which is way, way

> awesome,especially with the

> 105 degree heat index!)

> So the guy called me,and said he had a little

> something up his sleeve

> extra for us.I couldnt imagine what that could

> be,and immediately

> started to protest NO!! you have already done so

> much for us!!

>

> So the guy says.......so I noticed that you like the

> color

> burgundy(from when he was in our house). And I was

> all, um, yeah.

> So he says, well, while you guys were downstairs,

> and I ran upstairs,

> I measured your chair and couch, and looked around

> and noticed you

> have a lot of burgundy colored knick knacks.

>

> I still couldnt figure it out.

>

> So he says, So, we all talked about it and decided

> to do this, and

> anyway, we went ahead and bought your family a new

> burgundy leather

> living couch and chair!!!!!!!! I was so

> stunned!!!This is all on our

> list of things to do for dust allergies, etc, but we

> could not afford

> it yet. Now, we can focus on the flooring. I feel so

> humbled and

> overwhelmed and giggly. I have no idea what this

> looks like, or

> anything, and I DONT CARE. I may never even let the

> children sit on it

> LOL..

>

> So I was reading this and thinking we should share

> the love. Lets have

> our group email Extreme Makeover for Terri's family

> and see what

> happens.Whaddya think?

>

> Valarie

>

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

> This forum is open to parents and caregivers of

> children diagnosed with a Primary Immune Deficiency.

> Opinions or medical advice stated here are the sole

> responsibility of the poster and should not be taken

> as professional advice.

>

> To unsubscribe -unsubscribegroups (DOT)

> To search group archives go to:

> /messages

>

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