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The Greatest Gift: Ziff family continues efforts to educate about organ donation

Adam and Lisa Ziff may never know the story behind the heart that beats in their daughter's tiny chest, but they are thankful every day for the family that was brave enough to donate it. 


"There is no greater gift you can give to any family than the gift of life," said Lisa Ziff. "What that family did for us is more than we could ever possibly repay."


Two years ago, the Ziffs were eagerly anticipating the birth of their first child. On Jan. 23, 2004, they welcomed little Shay into the world five weeks early. They knew because she was premature that some challenges might await them, but never did they expect that within weeks their little girl would be clinging to life, awaiting a heart transplant. 


Shay was diagnosed with restrictive cardiomyopathy, a condition in which the heart chambers are unable to fill with blood properly because of the stiffness of the heart. Doctors told the Ziffs that without a heart transplant, Shay would die. 


For five weeks, the Ziffs waited and prayed that a heart would become available for their little girl. Their family and friends helped support them by writing 2,500 letters to increase awareness of the importance of organ donation. 


"You can't do something other than follow the system, but we have decided instead of being upset, we had to do something positive," said Lisa. "It's such a mixed-feelings thing. We wanted it so badly for our child, I didn't want to wish ill on someone else's child."


Finally, when Shay was 4 months old, the Ziffs were informed that a heart had become available for her. 


"She was literally hanging on minute-by-minute at that point," said Lisa. 


Almost two years have gone by since Shay's ordeal began, and since that time she has made incredible strides. 


Developmentally, she is behind other children her age because the first nine months of her life were spend in the hospital, lying in bed. 


"When she came home, her ages was more like negative months because she didn't have that developmental time normal babies have," said Lisa. 


Shay undergoes physical, speech and occupational therapy for two hours each day, four days a week. She will take immunosuppressant medication for the rest of her life so her body doesn't reject the transplanted heart. The medication weakens her immune system, which makes it extremely important that she not be exposed to germs that could develop into a life threatening illness.


While their daughter continues to amaze them with her progress she makes each day, Adam and Lisa continue efforts to educate the public on the importance of organ donation. They are active with the Gift of Life, a Michigan organization that coordinates tissue and organ donations from a deceased person and matches them to a recipient on the national waiting list. 


Currently, there are 2,830 people in Michigan waiting for a transplant. 


"Seventy-eight people in the state of Michigan died already this year waiting for a transplant that could have been available if more people signed up to be organ donors," said Jennifer Tislerics, spokesperson for Gift of Life. 


Tislerics said there are many misconceptions about organ donation, including people thinking they're too old, or they have a medical ailment that would preclude donation. 


"There's no medical disease that would stop someone," said Tislerics. "Every case is handled on a case-by-case basis. It doesn't matter if you've had cancer or diabetes or high blood pressure. Even transplant recipients can also become donors." 


Speaking with family members about your wish to be an organ donor is also extremely important, said Tislerics. 


"Talking with family members assures they know what their wishes are and can help prevent delays or confusion," said Tislerics. 


Additionally, just checking off the box on the back of your driver's license is not enough to ensure your organ donation wishes will be fulfilled.


"As of right now, we very rarely see the back of a license," said Tislerics. "Signing up on the registry is the way to ensure your wishes are met."