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marie10

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1 reviews

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

Rating: 5 stars  

At two and half days old my daughter was being discharged from the hospital. She was not doing perfectly well so I took her to the nursery to have the nurses check her out. It turns out that she was dying. The nurses and doctors worked very hard and fast to save her life--she was minutes from being gone. Keep in mind that at this point she was already discharged by the pediatrician. After getting her stabilized, Caylee was taken to Children's Mercy Hospital. Later that evening we were informed that our precious daughter has a congenital heart defect called Hypoplastic Left Heart Syndrome. A day or so later we were given a box from CHD Families. There was all kinds of information about Heart Defects. Information was provided to get support, so I called. I was contacted by a woman whose son has the same condition as my daughter. What a feeling to hear all the same things I was going through. I no longer felt alone. Later we found out that they are in the AHA Walk every year to raise money for CHD research. And every dime raised goes only to Congenital Heart Defect research. This organization has been so nice to have. We attended their annual picnic. Being at the picnic we were able to meet even more people with the same condition as our daughter. Everyone is so easy to get in contact with. They are working hard to make more people aware of CHD's. I never knew that it was the #1 birth defect. Every person in America should know this!!

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

Role:  Client Served & I received support and information when my daughter was diagnosed with a CHD.