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2 reviews

Review for Barth Syndrome Foundation Inc, Larchmont, NY, USA

Rating: 5 stars  

Barth Syndrome Foundation has literally helped our family in so many ways, there is not enough Thank yous in this world to thank them enough for what they've done for my son and our family. They are always there for us in any way we need them.

Role:  Client Served

Review for Barth Syndrome Foundation Inc, Larchmont, NY, USA

Rating: 5 stars  

The Barth Syndrome Foundation came into my life just this year when my son was born in March 2012. Having my first child was an amazing experience, but once he showed signs of heart failure it brought me to my low. I was happy but yet worried, especially when your two day old son goes to the NICU after he was born. Thank god we caught his heart issues and breathing issues right away, otherwise it would of been no good for us going home with him ourselves. It scares me everyday with this deadly disease my son has called, Barth Syndrome. As of now he is doing good, thanks to all of his numerous doctors and constant doctor visits. It takes alot of strength to stay strong and keeping strong not knowing what will happen each day with my son, but I do and that's all I can do. The Barth Syndrome Foundation has been a tremendous help with dealing with this disease. Everytime I am worried, I talk with other parents who are worried about the same thing with their son, it's nice because we all understand where eachother is coming from. It's nice we actually all became a family. I was told to take each day by day and that's what I am doing. My son is doing good now, but I don't know what the future holds, but I hope it holds a cure for these wonderful, amazing little boys who are soo strong and who are LOVED unconditionally.

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Role:  Client Served