Appleton Boy Featured on National TV: "Sam's Story"
Photo: Video by nbc26.com
CREATED Jun. 7, 2013
APPLETON, WI -- A 5 year-old boy from Appleton, who is battling a deadly liver disease, is getting the chance to share his story on national TV.
The family's journey will be featured on “Rock Center with Brian Williams” Friday at 9:00 p.m.
Sam O'Connor is using a life-saving drug that has not been approved by the FDA and clinical trials are controversial. But without the drug, Sam probably wouldn't be alive today.
“Very feisty, he's a fighter for sure,” said Debra O’Connor, Sam’s mother.
Sam has Microvillus Inclusion Disease.
“There's nothing to absorb the nutrients out of the food into his body,” said Debra.
His liver doesn't work like ours. After spending nearly the first three months of his life in a various hospitals, the doctors finally determined the problem. But they left little hope for Sam’s family.
“We were essentially told to go home and enjoy the time you have with him,” said his mom.
But his parents decided they were not settling with that answer. While at one of the hospitals, a resident told them about an experimental drug.
“He said, I don’t really know much about it, but there's this treatment in Boston,” remembered Debra.
So they flew to Children's Hospital Boston, and that’s treatment has saved Sam’s life. The drug is Omegaven, basically concentrated fish oil.
“We were wondering if it's too good to be true,” said Jason O’Connor, Sam’s Dad.
“With the very first treatment, the very first dose, we could tell a difference,” said Debra.
The drug is only available in Boston from Dr. Mark Puder. The O’Connor’s said the FDA won't do clinical trials, where half of babies in the study would get the drug; the other half would get a placebo. Essentially, 50% of infants would live, 50% would die.
So now Sam and his Dad travel to Boston every other month, for a $1,000 trip that’s not covered by insurance. They’re holding out hope that one day the FDA will approve the miracle drug, and they can it in Northeast Wisconsin.
“If he's fighting the fight, of course we're going to,” said Debra.
If you would like to learn more about Sam’s story, visit: http://www.samoconnor.com.
You can watch Dr. Nancy Snyderman's full report, Friday, June 7 at 10pm/9CDT on NBC's Rock Center with Brian Williams