“Your daughter has tumors in her heart.  More than likely she has Tuberous Sclerosis.  Your daughter may be mentally retarded.”

That was the message that we received over six years ago, after our daughter Olivia had an ultrasound in utero that revealed the presence of rhabdomyomas (benign heart tumors).  When rhabdomyomas are found in children, there is a high degree of certainty that they have Tuberous Sclerosis Complex (TSC).

 What is TSC?  This was the first question that we asked ourselves.  Like so many times before, we turned to the internet to become educated about what having a TSC baby was like.  This was a huge mistake.  It seemed that the only things that were published about Tuberous Sclerosis were all negative.  Mental retardation.  Infantile spasms.  Tubers.  Tumors.  Autism.   This was all we could find.  With six weeks to go until Olivia was born, we had lots of time to ponder about what was to come.

July 14, 2008 was the day that our journey began.  Any hopes that we held onto that Olivia was one of the few babies that had heart tumors, but not TSC were dashed when she was born with ash leaf spots on her legs and back.  These white blemishes are yet another indicator.

Having done our homework prior to Olivia being born, we had been in contact with the Tuberous Sclerosis Clinic at Cincinnati Children’s Hospital Medical Center (CCHMC).  When Olivia was just nine days old, we visited CCHMC for the first time.  They gave us as much guidance as possible, but so much of TSC requires a wait and see approach.

We have been back to CCHMC many times since our first visit.  Our most recent visits have been much different thanthe week of May 10, 2010, which is when Olivia had a two phase brain surgery to alleviate uncontrollable seizures that she was having since Christmas.  It was during the second phase that the notion of starting an organization to help others was born.

While awaiting the nurses’ arrival to take Olivia back to surgery, we were sitting next to a couple that was having a similar procedure performed on their child.  With nothing but a dividing curtain separating us, we could hear it all:

“We don’t have any more money.”

“We have exhausted all of our credit cards.”

“We don’t know what else to do.”

Not having the resources to care for the most precious asset, your child, is something that no parent should have to experience.  Sadly, many do.  It is our hope that through the efforts of the Olivia J. Murray Foundation we are truly able to help others help themselves.