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Review for Congenital Heart Defects Families Association, Kansas City, MO, USA

Rating: 5 stars  

When my son Xavier was born in 2003 with Hypoplastic Left Heart Syndrome, I was in shock. After a perfect pregnancy, a sonogram revealed that something "may" be wrong with his heart. This was the day before he was born. When he was officially diagnosed family and friends got on the internet printing various articles on HLHS. Everything that I read scared me. What I didn't know was that my best friend in Alabama was searching by leaving messages on different CHD websites. A woman named Julie responded to one of these messages saying that she didn't live very far from the children's hospital. That she had a son with a heart defect and that there was a Congenital Heart Defect support group in the area. I spent the majority of my time in my son's room in the PICU. Even though I had a great amount of support from family and friends, I still felt alone. I was thrust in this life and I didn't know what to expect or how I would handle it. One afternoon I left my son's room and an envelope had been left for me. Inside was a folder with information about The Congenital Heart Defects Families Association. Julie had dropped it off. With in the span of an hour I had a renewed sense of strength and hope. Most of what I had read previously about CHD left me with a grim picture of my son's future. But here was a pamphlet showing happy, smiling kids. Most importantly I realized that I wasn't alone. My son faced many ups and downs, and through it all CHD Families was there to support us. They truly become your family. When we went to St.Louis to wait for a heart transplant we received care packages. Those really brightened up the long days. Sadly my son Xavier passed away on May 23rd 2005, one month and one day after his heart transplant. He was 21 months old. After my mom and my grandma, Julie from CHD Families was the next person that I called. She was on her way to a support group meeting with some of the other members. She said that when they arrived for the group and told everyone the news, they cried. CHD Families truly becomes your family. Since my son has been gone, a little over 5 years ago, CHD Families continues to be a source of support with the CHD Families Grief support group. When I met Julie, along with Valerie, (who became one of my biggest supporters), CHD Families was a small group. I don't know the numbers but they have grown. They have activities to get the kids together, a yearly picnic, they participate in the heart walk every year. There are online and face to face support groups available. They provide care packages to families in the hospital. I can't say enough wonderful things about CHD Families Association. There is a candle lighting in Dec. every year for National Children's Remembrance Day. It is a very nice way to remember your child. I can't imagine having gone through all that we did with our son and not having CHD Families there to support us. They are an amazing group!

I've personally experienced the results of this organization in...

their offering of support to my family.

If I had to make changes to this organization, I would...

not change anything.

What I've enjoyed the most about my experience with this nonprofit is...

meeting other families and children with CHDs, participating in the activities.

The kinds of staff and volunteers that I met were...

kind, encouraging, supportive

If this organization had 10 million bucks, it could...

go to helping fund research for Congenital Heart Defects. There is still so much unknown.

Ways to make it better...

my experience with the group has been wonderful.

In my opinion, the biggest challenges facing this organization are...

I don't know of any.

One thing I'd also say is that...

if you have a child with a congenital heart defect I would urge you to look into Congenital Heart Defects Families Association

How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?


Role:  Client Served & received support.