My Nonprofit Reviews

I have 3 children, including a set of twins, both born healthy. However my world turned upside down when one of my twins, Zara, at 3 months of age was diagnosed with idiopathic dialted cardiomyopathy, and was in severe end stage heart failure. I had taken her to numerous doctors for a couple of weeks to determine why she wasn't thriving and no one could help, no one had answers. This disease is a silent killer with few symptoms. That night she aas diagnosed in the ER, we were told our perfectly healthy looking baby may not live through the night. Cardiomyopathy was a word I had never heard before. Frantically while my daughter held on to dear life through feeding tubes, IVs, and electrodes taped all over her, I sat and researched what I could on the Internet kiosk vending machine in the hallway outside her ER feeding coins into a machine, trying to read through my haze of endless streams of tears any information I can on the disease. What I learnt was this- that cardiomyopathy is very different between adults and children. That causes of CM in children may be unrelated to causes of CM in adults. That there was NO information available to parents and families of children with CM that was relevant to them except one site, and only one~ that was the Childrens Cardiomyopathy Foundation. CCF has provided valuable information relevant to my daughter's condition and age, has put me in touch with other families with children with CM, has provided tremendous support, and without the wonderful work they do, I would have been lost. We need parents and healthcare prifessionals to become more aware of Cardiomyopathy in children, we need to find a cure for this dreadful disease, and mostly figure out what causes this disease in children so we can prevent further deaths. I am a supporter of CCF, this organization is invaluable to our family.
McRae family

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