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About our Foundation

   The Syliah Volmar Foundation is a non-profit organization named in honor of, and inspired by, an adorable little girl who lost her battle to dilated cardiomyopathy (a rare heart disease in children) while awaiting a heart transplant.  Syliah was born May13, 1997, at St John’s Hospital in Queens, New York, daughter of Dr Louis E. Volmar and Huguette Bastien Volmar, RN.  She was diagnosed on the eve of her 6th birthday and died six months later on Thanksgiving Day, November 27, 2003, at the New York Children’s Presbyterian Hospital.
    Syliah was a joy to everyone who knew her because she was such a warm child, always greeting people with respect and love.  She wanted to see that everyone was happy.  She even expressed her love towards strangers.  Syliah treated everyone who crossed her path like royalty.  In school, she would hug everyone, classmates, teachers, even the principal.  When told she didn’t have to hug everyone she would meet, Syliah looked up and with a concerned look on her face she said, “Everyone needs to get hugs, it always makes a person feel good inside”.
    The Syliah Volmar Foundation wants to continue Syliah’s legacy by making a difference in the lives of young children and their parents.  Learning to love, and to love unconditionally is a behavior that doesn’t take place automatically, nor is learning to love unconditionally an easy task.  One must be educated on “how” to love.  Educating parents on how to love and cherish their children and to love them unconditionally is a fundamental goal of the SVF.  We want to teach parents to appreciate the gift of parenthood, to appreciate their children, enjoy the moments spent with them, get to know them, listen – really listen – to their small voices, and never minimize them or their contributions.
    When Syliah became sick, it didn’t seem serious.  She had flu-like symptoms.  Then she was diagnosed with dilated cardiomyopathy and suddenly life, as Syliah and her family knew it, would never be the same.  The best doctors in the world devoted their knowledge and experience to give her the best possible care.  In the community, believers of all faiths prayed for her health to improve.  Syliah, herself, was a faithful believer in Christ and prayed Jesus would heal her heart because she wanted to go home and be able to go back to school.  But God had a better plan for Syliah and her family.  Syliah’s passing gave life to a foundation dedicated in bring about happiness, healing, and friendship throughout the community.
    The SVF is our way of giving God our Thanks and others our understanding of the kind of love anyone can receive when they believe.  We watched the medical teams at work and we know that if there were anything they could do to keep Syliah alive they would have done it.  This is why we don’t question God’s decision in taking Syliah away because giving us the love that was her life, is without question, a precious gift we will always treasure.
    The SVF intends to make every effort in helping in the research on pediatric cardiomyopathy and assist with increasing awareness and advocacy related to the needs of affected children and their families.  For now, a heart transplant is the only lifesaving cure for children with cardiomyopathy.  And although Syliah’s condition had gotten so severe that had a heart became available it would not have saved her, she didn’t like the idea someone had to die in order for her to live.  Our hope is that more lives will be saved and one day every child affected with cardiomyopathy will be cured and able to live a full and active life.