December 25, 2011
I am Simon's grandmother. He died while taking an evening nap lying next to his mother. He didn't cry out, he didn't jerk or move, he just never woke up. Thanks to some dedicated medical people we found out that Simon suffered from an irregular heart beat called Long QT Syndrome. The mission of Simon's Fund (simonsfund.org) is to save a child’s life . . . and then another, by raising awareness of conditions that lead to sudden cardiac arrest and death. In a short five years my children have screened over 3500 children in the greater Philadelphia area; they have saved the lives of 35 young people, about one in every hundred. Simon's Fund has played a major role in getting legislation passed in PA to make sure athletes who suffer from dizziness or fainting (number one sign of a possible heart condition) get medical treatment. Italy screens the hearts of all their children; their mortality rate dropped by 89%. Simon's Fund wants all children to have their hearts screened so that no other family has to go through what my children went through.
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December 24, 2010
My three month old grandson, Simon, died; months later his parents started Simon's Fund so that no other family would feel the pain of loosing a precious child. For the last five years Phyllis and Darren have found the strength to coordinate heart screenings to save other lives; to date 20 children have benefited from their determination and dedication to changing the course of children with unknown heart defects. Each time another child dies on a field, court, swimming pool deck, Phyllis and Darren feel the pain of the parents and yet become more determined to organize another screening, another fund raiser,another way to involve the meidcal community in their crusade. They fight the sadness of a lost child daily, yet with the support of many they are able to continue living knowing they are helping another family.
I've personally experienced the results of this organization in...
speaking with the children who have undergone open heart surgery which saved their lives after a screening at a Simon's Fund screening.
Ways to make it better...
If I had to make changes to this organization, I would...
Volunteer & I give emotional support, monetary support, and volunteer at screenings and fund raisers.
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