I really had no one to talk to about all this, our families were really terrific, but as you all know it just isn't the same as talking to people who walk a mile in your shoes; so I turned to the internet. I found a support group that was very busy, very overwhelming and frightening to someone so new to this disease. There were times when I would feel guilty for being upset or worried about Sara, when so many other children had it so much harder or way more complicated than our daughter. I decided that wasn't the place for me to be. Don't get me wrong I met some of the nicest people, who answered all my questions and were extremely supportive and understanding (shhhh... some of them came on over to our group once it was created and are still here)

I started my own email support group June 09, 2000, but specific to Sara's heart defects. It was called "Special Kids with VSD's" and with the help of my dear friend Beth, I had my first member and a web page that came with a web master (yes, Beth). We really didn't expect much to come of the site or email group, we figured we would give it a few weeks and see what happened.

A Year Later....

After many families became members, all with children that had VSD's and some other heart defects too, we decided to open up the group to all parents with children living with all types of heart defects. (I was more excepting and had a better understanding of heart disease in children, by then)A little more than a year after this group was created we changed our name to, "Special CHD Kids" on June 22, 2001.

On June 16, 2001 I started another email support group that was specific to families who live in the Province of British Columbia Canada, where I am. There aren't to many members on that list, but we do have the BC Children's Hospital in common. All of children would have been seen by one of the great Cardiologist there.

It was decided by a poll, by our members to have a set limit as to how many members we would like to have in the Original group. Once that number was reached we started to actually have a waiting list, can you imagine? I sure couldn't. So we created a second Special CHD Kids group for the over flow, or for current members that perhaps wanted a little bit slower paced group to interact with. One thing I knew for sure, was that if the person wanting onto our group, wasn't part of another list already, I didn't want them to be left without support. I won't have that! So on September 21, 2001 "Special CHD Kids ~ 2" was created.

In September of 2002, Special CHD Kids started to have a monthly newsletter go out. With that we decided it should have a name of it own. So in the October newsletter we held a contest for "Naming the Newsletter". From the entries recieved we decided to go with the name "Hearts of Hope" submitted to us by Cathy Schweinberg. Well that just got the ball rolling. November 07,2003, we decided to change the entire works over to "Hearts of Hope United" with that came a new web page, new banners, new email addresses...on and on. So here we are today...always looking to add, modify and improve on our site.

We have the following members on each email support groups:
(As of June 2003)

Hearts Of Hope United: 66
Hearts Of Hope United ~2: 19
BC's Hearts Of Hope United: 5 (We are working on it!)

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