Family founds foundation to fight disease
October 06, 2010 - It's the sentence every parent fears hearing and every doctor dreads saying – "I'm sorry, but I'm afraid there's something wrong with your baby."
|Meet the Murrays – Olivia (from left), Sarah, Rob and Abby. With them is Dr. David Franz, a neurologist who specializes in Tuberous Sclerosis Complex. Here we see the Murrays presenting him with an $1,100 check for Cincinnati Children’s Hospital Medical Center. Photo provided. (click for larger version)|
Once it's uttered, nothing is ever the same again.
Rob and Sarah Murray, who graduated from Oxford High School in 1998 and 1997 respectively, know all too well what it's like to receive that devastating news because their daughter, Olivia, was diagnosed two-and-a-half years ago with Tuberous Sclerosis Complex (TSC).
TSC is a rare genetic disorder that causes tumors to form in many different organs, primarily the brain, eyes, heart, kidneys, skin and lungs.
Although the tumors are non-cancerous, they can affect the proper functioning of the organs and lead to developmental delay, mental retardation and autism.
According to current estimates, one in 6,000 are born with TSC. Nearly 1 million people worldwide are known to have it, with approximately 50,000 in the United States. There are many undiagnosed cases due to the disease's obscurity.
"The symptoms of TSC don't really start presenting themselves, even in utero, until after 20 weeks," Rob said. "That's why it's one of the more under-diagnosed illnesses out there because most women get their one ultrasound at 20 weeks and then that's it. A lot people don't find out what's going on, unfortunately, until their kids are having seizures."
The Murrays knew nothing of the disease until an ultrasound test performed on Sarah when she was about 34 weeks pregnant revealed Olivia had tumors in her heart.
"I'll never forget the day we found out," said Rob, who teaches fourth grade at Leonard Elementary. "It's one of the largest regrets of my life because I wasn't there for my wife."
Sarah was at the hospital with her mother-in-law, who later told Rob she could hear his wife "sobbing all the way down the hallway."
Fortunately, this story has a happy ending because Olivia, who turned 2 in July, is doing just fine these days.
Back in May, she had a successful two-phase brain surgery at Cincinnati Children's Hospital Medical Center (CCHMC) to stop the seizures that she began having when she was just 3 months old.
The surgery was to remove a "sizeable" cortical tuber from her brain that was causing the seizure activity. Tubers are benign tissue growths that displace normal brain tissue growth, which contributes to neurological problems.
Olivia is no longer in danger of having any mental disabilities.
"Cognitively, she's ahead of the game on some things," Rob said. "In everything else, she's right where she should be."
Olivia has a few tumors on her kidneys and one close to her optic nerve, but they aren't causing any problems. "At this point, we haven't done anything about them," Rob said. "(Doctors) don't do anything unless they impact the organ's function."
The Murrays realize how lucky they've been to be able to give Olivia the best medical care possible thanks to their excellent health insurance coverage.
Rob estimated the medical bills alone have amounted to "over $100,000."
"It's significant," he said, noting that doesn't include the $3,000 the couple's spent out of their own pocket for lodging, gas and food during their trips to Cincinnati and for co-pays on Olivia's various medications.
The Murrays realize that not everyone is as fortunate as they are and that dealing with TSC can be too costly for some families. Rob recalled overhearing one couple telling a doctor, "We've spent all of the money we have. We've maxed out all of our credit cards."
"They're trying to figure out how they're going to pay for all of this, all the treatment and all the care," Rob said. "My God, I couldn't imagine being in that position."
That's why Rob and Sarah established "The Olivia J. Murray Foundation" to raise funds for treatment and research related to TSC and to aid families. "It's our opportunity to try and help out other people who are less fortunate," Rob said.
They've already held one fund-raiser that generated an $1,100 donation for the CCHMC. Another fund-raiser is scheduled for 7:30 p.m. Friday, Oct. 15 at JD's Key Club, a dueling piano bar located at 1 N. Saginaw in Pontiac. Tickets are $10 in advance or $12 at the door.
In addition to ticket sales, the foundation will receive 25 to 40 percent of the food and beverage (both alcoholic and nonalcoholic) sales, depending on how many folks attend.
To purchase tickets for the fund-raiser or learn more about The Olivia J. Murray Foundation, please contact Rob via e-mail at firstname.lastname@example.org.
Those wishing to send contributions are asked to make their checks payable to The Olivia J. Murray Foundation and mail them to 10385 Valley Drive, Goodrich, MI 48438.
CJ Carnacchio is editor for The Oxford Leader. He lives in the Village of Oxford with his wife Connie and daughter Larissa. When he's not busy working on the newspaper, he enjoys cigars/pipes, Martinis/Scotch, hunting and fishing.