Re: Lessons From Celebrities With Down Syndrome

[Guest guest]

I thought this link might interest some of the MDS readers:

*http://ambassadors.net/archives/issue24/educators.htm*

*Lessons From Celebrities With Down Syndrome*

Barb - mom of

Charlie - Age 15 [?]

Plymouth, NH

On Thu, May 27, 2010 at 9:32 AM, Hellard wrote:

>

>

> Thanks Barb! Please read below to see what Barb had to say...

>

> I'll keep this

> message in mind, thanks.

>

> As a way of

> introduction,

> my son, Charlie, was born 15 years ago in Phoenix, Arizona, arriving

> three weeks early. He went " blue " and was immediately put into

> Pediatric ICU to get more oxygen. I didn't get to hold him for two

> days. The pediatrician who was sent in (I was going to pick one to

> attend the birth that morning), was curt and gruff. As part of the

> delivery team, a cardiologist was rushed in as well. She was wonderful -

> but it was scary for me!

>

> He came in and told

> me

> about his heart defect

> and said they would send out for a chromosome test because it looked

> like he had a simian

> crease on his palm. I didn't care if he were Down's or not; I

> was concerned about his heart defect, which I later found out was AV

> Canal Defect. Charlie came out of ICU 36 hours later and came home with

> me a day after that. When we went for his first pediatric checkup to

> that doctor's office, we were made to wait two hours - fun with a baby, a

> two-year old, and my pain from the delivery. We finally got in to see

> the doctor, who waited a full two minutes to turn to face us, said " Yes,

> he has Down's Syndrome " and abruptly turned back to his desk! I told

> him we were there for the checkup, got it, and I never went back to that

> doctor again!

>

> I found a good

> pediatrician, who also happened to be a friend of the cardiologist. A

> year after his birth, I got a glimpse at his medical record. Clearly

> written across the page with his lab results for Down's was " Mosaic. "

> Whoa - was I every upset! The first pediatrician knew that - and never

> said anything to us!

>

> Charlie is a

> delightful

> boy - great memory, womanizer, loves all people for that matter, smart,

> and a stubborn teenager. There's a lot more special about him, but I'll

> save that for later.

>

> Grateful for all

> that is,

>

> Barb Spike -

> Mom

>

> Charlie White - age

> 15

>

> Hellard

>

> IMDSA President

>

> brandy@... <brandy%40imdsa.org>

>

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>

> International Mosaic Down Syndrome Association

>

> PH:

>

> Toll Free: 1-888-MDS-LINK

>

> http://www.imdsa.org

>

>

>

> From: Hellard <the4hellards@... <the4hellards%40yahoo.com>>

> Subject: Welcome another new family!

> To: " imdsa " <mosaicds <mosaicds%40yahoogroups.com>>

> Date: Wednesday, May 26, 2010, 9:14 PM

>

> Hi everyone! We have another new family joining us this week! Here is what

> she had to say...

>

> My youngest son was born 15 years ago with MDS, I want to get to know

> other

> families so we can share

> our experiences and joys and to help

> support new MDS families on their

> wonderful journey.

>

> Welcome! I'm so glad that you have found us! Please tell us your names, and

> where you are from. How is your son doing? What grade is he in? Feel free to

> ask questions, or give advice that you may have!

>

> My name is and I have a 3 year old that has mDs.

>

> Hellard

>

> IMDSA President

>

> brandy@... <brandy%40imdsa.org>

>

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>

> International Mosaic Down Syndrome Association

>

> PH:

>

> Toll Free: 1-888-MDS-LINK

>

> http://www.imdsa.org

>

>