On November 9, 1997, our third child, Bernard Thomas, was born…the perfect
addition to his two older sisters. At just six weeks old, Bernie was diagnosed
with Biliary Atresia, a rare liver disease that destroys the liver ducts which
remove bile from the liver.
Just days later, Bernie under went surgery to drain bile from his liver, in
hopes of delaying his inevitable need for a transplant. However, the advanced
stage of Bernie’s disease forced the need for a full liver transplant earlier
than we had hoped. As donated organs are extremely scarce, we turned to a living
donor. On March 31, 1998, Bernie received a portion of his mother’s liver, truly
a gift of life.
The experience of having a son born with a life threatening disease, followed by
the transplantation process led us to seek support; we needed answers to
questions that faced our son and our family, not just at the moment, but those
we would face in the future as well.
The lack of such a resource moved us to educate ourselves and start The Liver
Foundation for Kids. We wanted to help find answers, promote organ donation, and
provide emotional and educational support to families who are facing the same
issues and fears that we did five years ago and still face today.
The Liver Foundation for Kids aims to fund research that may ultimately find the
causes and hopefully cures for the pediatric diseases of the liver that plague
our children. We also fund research that will lead to a better aftercare for the
transplanted child and hopefully to someday eliminate the ledger of potential
side effects that hang over their heads. Finally, we promote organ donor
awareness; the need for organs is imperative. It is sad, but due to the lack of
available and viable organs children are dying. The length of time an
infant/child often waits for an organ can leave the child so sick that the odds
of a successful transplant are severely compromised. Not all families have a
matching donor, and not all children have the health to wait on a list for an
organ.
By funding research, and promoting organ donation The Liver Foundation for Kids
is trying to eliminate pediatric liver disease and educate those families
afflicted with it.
The Liver Foundation for Kids is all volunteer run; no one draws a salary, or
derives any financial benefit from the funds we raise.
While our love for Bernie inspired the creation of The Liver Foundation For
Kids, the organizations’ mission is to provide hope to all children afflicted
with liver disease, and hope for their families.